Recent headlines have highlighted debates among federal parties over the proposal to extend Medical Assistance in Dying (MAID) to people suffering solely with mental illness.
Proponents of expanding Bill C-7 to mental illness claim that delays to do so are based on stigma and stereotypes promoting the belief that a mental disorder renders someone incapable of making a rational choice to die. Those that advocate for delaying an expansion suggest that more work is needed to ensure appropriate safeguards are in place to distinguish requests for MAID from illness-induced suicidal ideation.
The recent announcement that including mental illness in MAID will be delayed until 2027 gives provincial and territorial health-care systems more time to prepare for implementation.
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Putting access to MAID in context
People living with long-term mental illness should have the option to consider MAID, like others facing chronic, debilitating illnesses. However, access to MAID is a small part of a larger conversation we ought to be having about how the health-care system can provide supports and services that empower people with mental health disorders to navigate the long journey of mental illness with dignity and resilience. Extending support to the families that care for them should be considered key.
As the Centre for Addiction and Mental Health (CAMH) reports, mental illness is the leading cause of disability in Canada, and wait lists for services are far too long. For each person with a debilitating mental illness, there are family members — biological, legal or chosen — doing their best to provide support and care. But who supports these families as they navigate the challenges of persistent mental illness?
Despite decades of research demonstrating the importance of family caregivers for supporting people with severe mental illness, and the beneficial outcomes for all family members when families are supported, vital support services have declined throughout Canada. Families that are racialized, poor or newcomers are getting even less support in a depleted family support service system.
Examples of evidence-based family-focused supports that would help include family psychoeducation, peer support, and community-based, culturally-acceptable services that focus on whole families.
Supporting patients and families
In addition to asking health-care systems to prepare to end the suffering of mental illness by facilitating death, we should be asking legislators and policymakers to build a health-care system that supports better lives for people with mental disorders and their families.
Families manage mental illness out of sight of these leaders and society at large; their suffering is seen as a personal matter that is no one else’s business. But the numbers tell us that ending suffering from mental illness is everyone’s business. It requires networks of support for those who have been diagnosed and caregivers. Ignoring the families that support individuals with mental illness has ramifications for everyone’s health.
My research exploring the experiences of Ontario families affected by mental illness has shown there are gaps in the system when it comes to family support. Conversations with families reveal that, whether one is a caregiver or someone who has been diagnosed, those living with mental illness often feel isolated, alone and overwhelmed.
Family members who don’t fall into the definition of “traditional family” often report challenges throughout the care process. Families that are part of marginalized or lower-income groups face additional challenges to getting help and support, often due to financial barriers, language and cultural barriers, or other social determinants that correspond to inequities in access to health care.
The failure to build proper supports and services that meet the needs of families could worsen an already growing mental health crisis. If the family is stressed, that stress will impact everyone within it, caregivers and people struggling with a mental illness alike. This is suffering that can last for decades. The well-being of whole families affected by mental illness must be recognized as an issue of urgent concern.
Caring for people with long-term mental illness
Education and training are needed to ensure health professionals have the information they need to better support families. At the same time, more work must be done to promote the general public’s understanding of mental illness and reduce stigma, so people don’t feel ashamed about asking for help.
My work with the Family Caregiving Project to develop free online educational resources is a start. These resources help health-care professionals, educators and community groups better understand and discuss the experiences of families struggling with mental health issues.
Read more:
Medical assistance in dying for mental illness ignores safeguards for vulnerable people
But Canada’s families require government support as well. We need to ensure that our health-care system provides necessary services for families. Last year, we called on the Ontario government to fund targeted support for families living with serious and persistent mental illnesses, collecting nearly 1,500 signatures from people who agree family support needs to be a priority.
Living with a recurrent mental illness and having hopes rise and fall when treatments fail is a source of profound suffering for families all over Canada. People diagnosed with mental illness need to be part of the dialogue surrounding MAID eligibility because long-term mental illness can be devastating. At the same time, we have a health-care system that is focused on the short term of crisis and hospitalization, with little thought or investment for the months and years over which individuals and their families must find ways to carry on.
We need to offer more than assistance to death. We need to offer adequate resources and services that will get people help when needed, and support the mental health and well-being of all family members over the long term.
Charmaine C. Williams receives funding from the Social Sciences and Humanities Research Council (SSHRC). In the past she has received funding from the Canadian Institutes of Health Research (CIHR), the International Development Research Council (IDRC), the Ontario HIV Treatment Network, and the Ministry of Health and Long-Term Care.
