Health Care Consent: Health Justice

“When people are older, disabled, cognitively changed, distressed, or difficult for the system to place, do their rights become negotiable?”

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Our current funding cycle [Healthy Aging 2020-2030] is focused on supporting older adults to thrive. The central theme of our work has been this question: how might we shift to a new model of seniors’ care that supports people to age with dignity, autonomy, kindness and stability we’d want for ourselves?

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Through our work, we heard concerns from older adults, their loved ones, caregivers, and others about how healthcare consent is understood and applied in long-term care. The ability to make decisions about your own healthcare, including saying yes or no to treatment, is a fundamental human right. Yet relatively little attention has been paid to what consent looks like in practice for older adults, particularly when cognition changes, or conditions like Alzheimer’s disease are involved.

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To help explore these questions, we partnered with Health Justice for their legal expertise, commitment to human rights, and thoughtful approach to working alongside people with lived and living experience.

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Donate to Health Justice

The gap presented an important opportunity for our philanthropic support to make a meaningful difference.

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For two years, Health Justice has examined how B.C.’s Mental Health Act, particularly provisions related to involuntary treatment, affects older adults in long-term care. The project brings together legal expertise, clinical perspectives, and the knowledge of people with lived experience to understand when and how consent may be overridden, how existing laws are applied in real-world settings, and what those experiences mean for older adults, their families, and the people who care for them.

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Our hope in supporting this work is to strengthen understanding of the real-world impacts of B.C.’s current approach and bring a human rights-based lens to an area of healthcare that deserves greater attention. We also wanted to highlight possibilities for change, because it can feel daunting to know where to start.

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Donate to Health Justice

What drew us to Health Justice was how they do their work. Their community-based governance model shares leadership across their board, Indigenous leadership, and a group of lived-experience experts – people with lived or living experience of involuntary treatment. This approach helps ensure that the people most affected by the issues being studied are not simply consulted, but meaningfully involved in shaping the work.

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Philanthropy can play an important role in supporting work that asks difficult questions, centres the experiences of people most affected, and builds the evidence needed to inform better systems and practices. Health Justice’s approach reflects those values, combining rigorous legal research with respect, ethical and community-informed engagement.

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You can read the full report here.

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If you’re interested in supporting Health Justice, you can donate here and help continue their research, education, and advocacy for a better mental health and substance use health system grounded in lived and living experience.

Below are key recommendations based on identified themes through lived and living experience engagement as well as legal research.

Support a Person’s Needs and Dignity in the Community

Invest in expanding a publicly funded and accountable home care model. People's needs are better met in the community, and resources should be organized appropriately.

Design Systems to Meet Dementia-related Accessibility Needs

Implement and enforce best practice standards for dementia care across the entire continuum of care.

Eliminate Default Reliance on Restraints

Unmet access needs can lead to reactions and behaviours that are then labelled as aggressive or problematic by the healthcare system. A system under strain can also create pressure on staff to use tools that make these behaviours, and the provision of services in general, easier for the healthcare system but worse for the individual. The result is often the rapid and normalized use of restraints, especially chemical restraints like sedating medications.

Make Consent Meaningful by Restricting the use of Coercion

To safeguard against the inappropriate and harmful use of consent overrides, BC must put clear limits on when they can be used.

Limit the Ability to Exclude Substitute Decision-Makers

These laws should be amended to protect people’s right to have their chosen representatives involved in decision-making.

Overall: Implement a Monitoring and Oversight System that Leads to Meaningful, Measurable Change

Upholding dignity and consent within the healthcare and long-term care systems requires more than clearer guidelines and standards. There must be a system of independent oversight to routinely enforce standards and protect against rights violations in the first place, as well as respond meaningfully to complaints.

Learn More

How Lived Experience Can Transform Long-Term Care in BC

How can lived experience change long-term care to something we would want for ourselves?

How Lived Experience Can Transform Long-Term Care in BC: Part 2

In our previous blog, we shared why lived experience must be at the centre of efforts to improve long-term care. But what does it actually mean to centre lived experience?

Coercion and consent in BC's long term care services

When people are older, disabled, cognitively changed, distressed, or difficult for the system to place, do their rights become negotiable?

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