Health Care Consent with Physical Distancing: Understanding Decision-Making Rights in Canada
May 11, 2020
BY Krista James
Health care decision-making is a fairly social process. Most of us consult with people we trust in order to make the best decisions we can for ourselves. We talk about our concerns with family and close friends. We seek additional expert opinions. However, for many people with disabilities, the support of trusted allies is not just helpful—it may be integral to exercising legally protected health care decision-making rights. In this blog post I outline health care consent rights that require health care providers to facilitate access to family, close friends, and other trusted caregivers, and may indicate a need to relax rules around physical distancing to support decisional autonomy.
There are at least three kinds of health care decision-making rights that engage personal and legal relationships that support autonomy:
- The right to assistance with communication;
- The right to support with decision-making; and
- The duty of substitute decision-makers to consult with people for whom they make decisions.
In this post I discuss these three kinds of rights. Many legal principles apply across the country; however, some provinces and territories have developed legislation that enhances rights. In this post I aim to provide information that is accurate across Canada but also dive into specific rights created in various jurisdictions.
- Mental Capacity and the Right to Make our own Decisions
Let’s start with the fundamentals. In Canada, health care professionals do not consent to treatment. Instead, they recommend treatment, and they have a duty to provide people with adequate information to support informed consent. The common law doctrine of informed consent was developed by the courts: see for example Hopp v Lepp  2 SCR 192 and Reibl v Hughes  2 SCR 880. However, over the years, a number of jurisdictions—British Columbia, Ontario, Prince Edward Island, Quebec, and Yukon—have developed legislation that codifies and enhances health care consent rights. Across Canada, treatment without consent is a form of battery, and adults have the freedom to consent to or refuse treatment, including treatment that could save their lives.
What about Emergencies? There are some legal exceptions to this basic rule. For example, under both the common law and health care consent to treatment legislation, health care professionals are permitted to treat without consent in urgent circumstances. For example, in BC health care providers may provide treatment to preserve life, prevent serious harm, or alleviate severe pain where a patient does not have the capacity to consent for themselves and no substitute decision-maker is present to provide consent (s 12(1)). Prince Edward Island permits treatment without consent when a person does not have capacity where “the patient is experiencing severe suffering or is at risk, if the treatment is not administered promptly, of suffering serious bodily harm” (s 17). So if you are admitted to hospital unconscious, a physician can provide treatment to save your life. However, the fact that we are in a pandemic does not mean all treatment falls under the category of emergency—the exceptions apply to emergencies regarding a person, not an overall provincial emergency situation.
What about Mental Capacity? Every adult is presumed capable of consenting to treatment. This presumption applies to older adults living in long-term care and people with disabilities, including dementia. Although defined more specifically and in slightly varied terms in different laws, the concept of capacity basically refers to the ability to understand relevant information and apply it to your own situation. A person has the right to make decisions if they can understand relevant information, such as: what condition do they have? What are some of the risks of the proposed treatment? As a result, capacity is decision-specific, and a person can be capable of making some decisions, and not others, or capable on some days, and not others. Under this framework, many people with disabilities can make their own decisions.
Other Exceptions? Some other specific exceptions exist. For example, uniquely in BC, when a person is involuntarily committed under the Mental Health Act a physician has the legal authority to consent to the person’s psychiatric care. Note that this approach has been criticized significantly. See a recent report by the Community Legal Assistance Society.
- Assistance with Communication
Back to the three legal rights that engage communication with family, close friends, and other trusted caregivers. People with disabilities have a right to assistance with communication. This right is supported by different types of laws in Canada.
First, both human rights laws and the Canadian Charter of Rights and Freedoms apply to the delivery of health services. These laws prohibit discrimination against people with disabilities. Accommodation of disabilities can require recognizing or providing different kinds of assistance with communication. The 1997 Supreme Court of Canada decision in Eldridge v British Columbia (Attorney General),  3 SCR 624, which considered access to sign language interpretation, noted that physicians cannot meet their informed consent duties without “being able to communicate effectively with their patients”, concluding that “effective communication is an indispensable component of the delivery of medical services” (at 70 and 72).
Second, a number of Canadian jurisdictions—Manitoba, Ontario, and the Federal jurisdiction—have developed accessibility legislation. These laws require governments and service providers to ensure accessibility of services. The legislation emphasizes the importance of accessibility in the means of communication. BC is currently creating similar legislation—see our blog post which provides an update on BC’s process.
Third, a number of provincial health care statutes impose an obligation on health care providers to communicate with people in a manner consistent with their skills and abilities. See for example, Yukon’s Care Consent Act, s 7 and BC’s Health Care (Consent) and Care Facility (Admission) Act, s 8. This language means that health care professionals need to adapt their ways of communicating to suit the needs of a person with disabilities. Arguably, this provision will sometimes require including in the discussion someone who knows the person with a disability well and understands their unique communication methods. Certainly, sometimes skilled clinicians will be able to adapt their practice in order to communicate effectively with a person who has a disability. But this is not true for all people with disabilities and all health care professionals. Some people with disabilities communicate using subtle and non-verbal strategies, and it may take time to learn how they communicate. Even for people with hearing impairments, not everyone relies on American Sign Language.
- Supported Decision-Making
Many people with disabilities who cannot make decisions independently can make some or all of their own health care decisions if they have support with decision-making from a person they trust. Other people with disabilities may make better decisions for themselves when they have support. Various laws uphold the right to supported decision-making in Canada (discussed below).
What is Supported Decision-Making? Based on our own research, supportive decision-makers provide assistance that is tailored to a unique person’s needs and abilities. They may “support” a person to:
- Understand the issues involved in a decision;
- Understand the consequences of a decision;
- Access the appropriate assistance or information to help them make a decision; or
- Express their views, acting as interpreter where required.
They can also help others to:
- Truly hear or understand a person who requires support;
- Appreciate the person’s needs, rights, values, preferences and goals; and
- Respect the person’s autonomy, dignity and wisdom—in other words, help prevent discrimination and bias linked to disability.
Where are Supportive Decision-Makers Legally Recognized? Four Canadian jurisdictions—BC, Alberta, Yukon, and Saskatchewan—have developed regimes for supported decision-making, including for health care. Supportive decision-makers go by different titles in the different jurisdictions:
- BC: they are called representatives;
- Alberta: they are called co-decision-makers or supporters (depending on whether they get their authority by agreement or court order);
- Yukon: they are called associate decision-makers; and
- Saskatchewan: they are called co-decision-makers.
Further, Manitoba’s The Vulnerable Persons Living with a Mental Disability Act recognizes the importance of support networks in enhancing the independence and self-determination of people with mental disabilities. See our study paper, Understanding the Lived Experience of Supported Decision-making in Canada, for a comparison of various supported decision-making laws in Canada.
International Law: Article 12 of the United Nations Convention on the Rights of Persons with Disabilities, which Canada ratified in 2010, requires signatory states to provide people with disabilities with access to the support they require in order to exercise their legal capacity. The United Nations considers this language to call for access to supported decision-making.
Health Care Consent Law in BC: Further, in BC, health care providers “may allow the adult’s spouse, or any near relatives or close friends, who accompany the adult to help the adult and offer their assistance to understand or demonstrate an understanding” of the information relevant to the proposed health care (s 8(b)). This language endorses supported decision-making for health care even where a person has not appointed a representative through a representation agreement.
Ultimately, in those jurisdictions where supportive decision-makers are recognized by law, people with disabilities are entitled to communicate with their supporters when health care decision-making is required. The supportive decision-maker can help them to demonstrate capacity for decision-making, and assist with decision-making.
- The Duty to Consult
Finally, in all jurisdictions in Canada, where an adult is not able to provide consent to their own health care, a substitute decision-maker must provide consent. Health care decision-makers cannot make substitute decisions in a vacuum; they have obligations to communicate with the person they represent in order to understand their desires and wishes. Here are some examples of duties:
- In Ontario, a health care decision-maker is required to consider an incapable person’s wishes regarding treatment (s 66);
- In BC, a temporary substitute decision-maker for health care is required to consult with the adult to the extent possible, consider their wishes, and comply with them if reasonable (s 19(1));
- In Prince Edward Island, a substitute decision-maker for health care must attempt to involve the patient in consideration of the decision in so far as is practicable (s 13(1)(e); and
- In Yukon, the a temporary substitute decision-maker for health care is required to consult with the adult to the extent possible, consider their wishes, and comply with them unless impossible or “the substitute decision-maker believes the care recipient would not still act on the wish if capable because of changes in knowledge, technology, or practice in the provision of care not foreseen by the care recipient (ss 18-20).”
Therefore, communication between a substitute decision-maker and the person they represent is legally required in a number of jurisdictions in Canada, and facilitating this dialogue may require communication in-person.
The right to consent to or refuse health care is a fundamental right recognize by our highest courts and codified in numerous laws across the country. Some people require support or assistance in order to exercise this right. These same people tend to be some of the more vulnerable members of communities, due to age, disability, or other factors. Over the years, the CCEL has often consulted with people with disabilities regarding their experience of decision-making for health care. People tell us that access to support and assistance from a trusted person can be critical to helping them to understand information, make choices, and communicate their wishes. See for example, Chapter 5 of our 2019 report Conversations about Care, and our project on Engaging People Living with Dementia in Decision-Making. People with disabilities also emphasize communication support, through people or technology, as critical to the exercise of decision-making autonomy.
As we noted in Conversations about Care, providing health care to people with disabilities, such as dementia, is important and challenging work. During this pandemic most of us have become acutely aware of the critical work of health care professionals and other hospital staff in supporting community well-being and saving lives. However, as we noted in Conversations about Care health care institutions “need to a develop a rights-based understanding of health care consent to complement the dominant health care orientation” (34). Hopefully this summary of the law can be helpful. This year we published a series of plain language resources on health care decision-making for people living with dementia and their families, working in collaboration with the Alzheimer Society of B.C. Although designed for people living with dementia, they provide an accurate summary of the law for anyone living in BC.