Healthcare substitute decision maker discussing advance care planning with doctor

Healthcare Substitute Decision Maker

A Plain-Language Guide

Read Time: 7 minutes

When it comes to planning for future healthcare needs, few roles are as important—or as misunderstood—as that of the healthcare Substitute Decision Maker (SDM). Understanding what a healthcare substitute decision maker is and does is essential for everyone. This person becomes the voice for someone who can no longer speak for themselves, making critical healthcare decisions based on the person’s previously expressed wishes.

Yet across Canada, this essential role goes by different names, operates under different rules, and carries different responsibilities depending on your province or territory. For residents in long-term care and their families, understanding this role isn’t just helpful—it’s essential.

As we recognize Advanced Care Planning Day on April 16, let’s clear up the confusion around Substitute Decision Makers and give you practical guidance in plain language.

Note: This article focuses specifically on Substitute Decision Makers for healthcare decisions, which is separate from Powers of Attorney who handle financial and legal matters. Depending on one’s personal circumstances, these two roles may be assigned to different people based on your needs and preferences, or the same person.

What Exactly IS a Healthcare Substitute Decision Maker?

Simply put, a healthcare Substitute Decision Maker is someone who makes healthcare decisions for you when you cannot make them yourself. But depending on where you live in Canada, this role might be called:

  • Agent (Alberta, Northwest Territories)
  • Representative (British Columbia, Nova Scotia)
  • Proxy (Manitoba, Prince Edward Island, Saskatchewan, Yukon)
  • Attorney for Personal Care (Ontario, New Brunswick)
  • Mandatory (Quebec)
  • Guardian (Nunavut)

Despite the different names, the core responsibility remains the same: to honor your wishes and values when making healthcare decisions on your behalf. This role is distinct from a Power of Attorney, which typically handles financial and legal matters.

Why Healthcare Substitute Decision Makers Matter in Long-Term Care?

For residents in long-term care settings, having a properly designated and prepared Substitute Decision Maker, especially one for healthcare decisions, is particularly crucial. 

Here’s why:

  • Most long-term care residents will eventually need someone to make decisions for them, especially those with progressive conditions like dementia
  • Healthcare decisions in long-term care can arise suddenly, leaving little time to sort out who should be making decisions
  • Without clear documentation, healthcare teams must follow a “default list” of decision-makers based on family relationships, which might not reflect the resident’s preferences
  • Conflicts among family members can arise when there’s uncertainty about who should be making decisions

Choosing the Right Person: It’s Not Just About Family Ties

It’s common to assume that a spouse or eldest child will naturally step into the role of healthcare decision maker. However, the most suitable Substitute Decision Maker is someone who:

  • Can respect and follow your wishes, even if they don’t personally agree with them
  • Stays calm under pressure and can make tough calls during emotional situations
  • Is reliably available to respond when urgent decisions are needed
  • Understands your core values and beliefs, especially those that influence your healthcare preferences
  • Feels confident navigating medical information and asking thoughtful, informed questions
  • Is organized and has the time to dedicate to the role

Take Maria, for example. She always assumed her husband would make decisions on her behalf. But after some reflection, she realized that he often feels overwhelmed in medical environments and struggles to advocate for himself.  In addition, his health was also declining and Maria wasn’t sure if he would be in the right state to take on the role when the time came.  Her younger sister however, a retired teacher who lives close by and is more assertive in healthcare conversations—might actually be a better fit for the role so she named both of them as substitute decision makers

Legal Requirements Across Canada: Simplified

While requirements vary across provinces and territories, here are the basic qualifications needed to appoint a Substitute Decision Maker:

  • Age requirements: Most provinces require you to be at least 18 or 19 years old to appoint a SDM, though Manitoba, Newfoundland and Labrador, Ontario, PEI, and Saskatchewan allow this at age 16
  • Capacity: You must be capable of understanding what you’re doing when you appoint your SDM
  • Documentation: While some provinces have specific forms, others allow more flexibility in how you document your choice

Similarly, to serve as someone’s Substitute Decision Maker, a person generally must:

  • Meet minimum age requirements (typically 18-19 years old)
  • Be willing and capable of fulfilling the role
  • Not have a conflict of interest (some provinces restrict paid caregivers from serving in this role unless they are family members)

Common Misunderstandings About Substitute Decision Makers

Some of the misconceptions about what healthcare substitute decision makers can do in their role.

Myth 1: “My SDM can just do whatever they think is best.”

Reality: Your SDM must follow your previously expressed wishes if they are known. Only when your wishes aren’t known can they make decisions based on what they believe would be in your best interest.

Myth 2: “Once I name an SDM, my own healthcare decisions don’t matter anymore.”

Reality: Your SDM only steps in when you’re no longer capable of making or communicating your own healthcare decisions. Until then, you remain in charge.

Myth 3: “I don’t need to talk to my SDM about my wishes.”

Reality: Without specific conversations about your values and preferences, your SDM will struggle to represent your wishes accurately. These conversations are the foundation of effective advance care planning.

Myth 4: “My SDM will automatically know what to do when the time comes.”

Reality: Even the closest family members often guess incorrectly about their loved ones’ preferences. Explicit conversations and documentation are essential.

Preparing Your Substitute Decision Maker for Success

Simply naming someone as your SDM isn’t enough. Help prepare them for this important role by:

  1. Having explicit conversations about your values, quality of life considerations, and specific treatment preferences
  2. Documenting your discussions and ensuring they have access to your advance care planning documents
  3. Introducing them to your healthcare providers if possible
  4. Updating them if your wishes change over time
  5. Discussing challenging scenarios they might face and how you would want them handled

Taking Action: Next Steps

As Advanced Care Planning Day approaches on April 16, consider these practical steps:

  1. Identify your current Substitute Decision Maker (either someone you’ve chosen or who would be selected by default)
  2. Evaluate whether this person is truly the best choice for the role
  3. Have a conversation with your chosen SDM about your values and wishes
  4. Document your choice following your province’s requirements
  5. Share your advance care planning documents with your healthcare providers and loved ones

Documenting who your healthcare substitute decision maker will be is a critical step in advance care planning. Remember, advance care planning isn’t just about paperwork—it’s about the meaningful conversations that ensure your voice will be heard even when you cannot speak for yourself.

Advance Care Planning Poster

By taking the time to understand and properly prepare a Substitute Decision Maker, you’re not just planning for your future healthcare—you’re giving an invaluable gift of clarity and confidence to those who care about you most.

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