ACP in Canada: Historical Barriers and Paths Forward for Marginalized Communities

Most Canadians will face a moment when they can no longer make their wishes known—and without a plan, someone else will make that choice for them. Advance Care Planning — ACP — is how you make that plan. ACP in Canada is governed provincially: terminology and legal forms vary by jurisdiction. The 2020 CHPCA Pan-Canadian Framework provides shared principles. At the centre of ACP is the Substitute Decision Maker (SDM)—the person who speaks for you when you no longer can.

The SDM framework was built for someone with a stable family, cultural alignment with mainstream medicine, and the means to plan ahead. It fails precisely those who need it most. Each community below carries distinct historical traumas—colonization, discrimination, poverty, stigma, incarceration—that the current system often ignores. Where progress is being made—in Ireland, Scotland, and Australia—there are lessons worth learning.

1. Indigenous Peoples

Historical Background

• Residential schools destroyed the family bonds, languages, and ceremonies that guide Indigenous dying.
• Forced removal from land broke the community networks on which collective end-of-life care depends.
• Coerced sterilization and medical experimentation left a justified fear of hospitals that persists today.
• Colonial law imposed individual capacity frameworks on peoples whose traditions are collective and elder-guided.

Key Obstacles

• SDM hierarchies have no place for community councils or elder guidance.
• ACP forms in English biomedical language shut out elders and remote communities.
• Without Indigenous providers or culturally safe facilities, people die far from land, community, and ceremony.
• The pen that signs an ACP form is the same pen the system used against Indigenous peoples before.

Possible Solutions

• Co-design Nation-specific ACP resources with communities, in Indigenous languages.
• Train Indigenous health navigators to lead ACP conversations on their own terms.
• Amend SDM legislation to recognize collective and family-council decision-making.
• Fund land-based palliative care within First Nations, Métis, and Inuit communities.
• Act on Truth and Reconciliation Call to Action 22 and the Indigenous Palliative Care Framework.

2. People with Disabilities

Historical Background

• People with disabilities have been institutionalized, placed under guardianship, and stripped of legal capacity over their own bodies, money, and homes.
• Two provinces had laws permitting forced sterilization of people with disabilities until the early 1970s. Indigenous, racialized, and disabled people were hit hardest.
• Canada signed the CRPD then carved out the right to keep SDM schemes—rejecting Article 12’s core demand: honour a person’s own will and preferences, don’t substitute someone else’s judgment.

Key Obstacles

• “Best interests” overrides what people with cognitive or psychosocial disabilities actually want.
• Every province relying on substituted judgment is out of step with Canada’s own treaty obligations.
• ACP tools are written for lawyers, not the people who need them most.

Possible Solutions

• Replace substitute decision-making with supported decision-making—as Article 12 requires.
• Build ACP tools people can actually use: plain language, Easy Read, AAC-compatible.
• Look to BC’s Representation Agreement Act and Ireland’s Assisted Decision-Making Act for a roadmap.

3. People Experiencing Homelessness

Historical Background

• Long-term homelessness has many roots: mental health facilities closing without replacement supports, a shortage of affordable housing, and the fact that Indigenous people and those leaving prison or child welfare are far more likely to end up on the street.
• Homelessness and health crisis feed each other: trauma, addiction, mental illness, and early death cluster together.
• Most will die younger than average, alone, in an emergency room, with no care plan in place.

Key Obstacles

• ACP assumes a fixed address and a stable network. Most people experiencing homelessness have neither.
• Without a trusted SDM, a government official decides—someone who has never met them.
• Past criminalization and forced treatment make healthcare systems a place to avoid, not seek out.
• The sheer task of survival crowds out advance planning.
• Without housing, documents get lost. No safe place to store them, no system to retrieve them.

Possible Solutions

• Bring ACP to shelters, supervised consumption sites, and drop-ins—where people already are.
• Train shelter and harm-reduction workers to raise ACP as part of everyday trusted care.
• Create digital ACP registries that emergency services can access—no fixed address required.
• Fund peer navigators with lived experience to lead ACP outreach—trust travels person to person.
• Look to Journey Home Hospice in Toronto—Canada’s first hospice built specifically for people dying without stable housing—as a model for low-barrier, harm-reduction-informed end-of-life care. Opened in 2022 by Inner City Health Associates, its 10-bed model integrates trauma-informed care, harm reduction, and ACP in a single setting.

4. LGBTQ+ Persons

Historical Background

• Homosexuality was a crime until 1969 and a mental disorder until the 1980s. Generations learned to hide who they were from doctors.
• AIDS-era survivors watched partners die without legal recognition while biological families who had abandoned them claimed the body and the decisions.
• Trans people have been treated as a diagnosis rather than as patients—and are still regularly called by the wrong name and pronouns in the very places meant to care for them.
• Chosen family—the people who often show up—have no legal standing under current SDM law.

Key Obstacles

• SDM law often gives authority to the biological family—who may be estranged, hostile, or strangers to providers.
• Chosen family and unmarried partners are shut out, even when the dying person named them clearly.
• Fear of discrimination keeps LGBTQ+ people away from hospice until it is too late.
• Standard ACP forms and clinical training ignore trans-specific needs: name, pronouns, medical history.

Possible Solutions

• Change the law: chosen family must be recognized in SDM hierarchies.
• Create ACP resources that name identity, chosen family, and trans-specific preferences explicitly.
• Train palliative providers in LGBTQ+-inclusive care—including trauma-informed care for AIDS survivors.
• Build chosen-family recognition into Power of Attorney and SDM forms.
• Partner with LGBTQ+ organizations to reach people where they have trust.

5. Incarcerated Persons

Historical Background

• Indigenous peoples are 32% of federal inmates but 5% of the population.. This is not coincidence—it is the legacy of over-criminalization.
• Long sentences fracture families. Many serving life have no one left to act as SDM.
• Prison is built for control, not care. That conflict sits at the heart of every palliative encounter inside.
• As the prison population ages, palliative need is growing—but the system is not keeping pace.

Key Obstacles

• Correctional staff make healthcare decisions by default. No ACP framework constrains them.
• Most incarcerated persons have no access to legal counsel or healthcare advocates to help them document their wishes.
• ACP needs privacy. Prison rarely offers it.
• Compassionate release exists on paper. In practice, most people die inside—without a care plan.
• Stigma and estrangement keep families away, even when they have every legal right to be involved.

Possible Solutions

• Make ACP a mandatory part of healthcare in every federal and provincial correctional facility.
• Train correctional health staff in palliative care and ACP—not just acute crisis response.
• Fix compassionate release so dying people can actually access it.
• Appoint independent healthcare advocates—not correctional staff—to support ACP.
• Pilot prison-based palliative care programs with Correctional Service Canada, drawing on UK and Australian models.

By the end of this session, participants will be able to: 

• Explain what ACP is in Canada, what an SDM does, and why the rules differ by province.
• Explain the tension between Article 12 of the CRPD and most provincial laws governing substitute decision-making.
• Trace the historical traumas behind each community’s distrust of the healthcare system—from residential schools to eugenics laws to criminalization.
• Name the specific barriers each community faces—and explain why a system built for the majority fails those at the margins.
• Explain why letting someone else decide—rather than supporting a person to decide for themselves—is both a rights failure and a care failure.
• Point to solutions that are already working—Journey Home Hospice, land-based care, chosen-family recognition—and say what makes them work.
• Draw on what Ireland, Scotland, and Australia have done—and bring those lessons home to Canada.

ACP in Canada: Historical Barriers and Paths Forward for Marginalized Communities
Tuesday, October 6, 11:30am-3:00pm (Eastern).

Professor Phelim Boyle

Phelim Boyle grew up in Ireland and came to Canada in his early thirties. He is a retired Professor of Finance and Actuarial Science, whose volunteer work with Hospice Waterloo Region sparked his interest in end-of-life care. He is a member of the Hospice’s Ambassador team that makes presentations to the community. Boyle has written and lectured on the Impact of privatization on hospice care. He has published several papers on finance, insurance and investments. Phelim is a member of the University of Waterloo’s Pension Investment Committee. His hobbies include tai-chi, Pilates and cycling.