It’s not enough to have wishes, you need to make them known

Imagine this: You’ve been seriously injured in a traffic accident. You’re lying unconscious in the hospital. For the moment, you’re stable, but there are important decisions to make about your treatment and care, and you can’t speak for yourself.

Now answer these questions:

  • Do you know who your substitute decision maker is?
  • Is this the person you would want to speak on your behalf?
  • Have you had a conversation with this person about your wishes?

If you answered “yes” to all three questions, I applaud you. Either you’re very proactive about your advance care planning or your spouse is (I’m looking at you, Mish!). If you answered “no” to one or more of the questions, this post is for you.

Do you know who your substitute decision maker is?

In Ontario, everyone has a substitute decision maker (SDM). If you’ve never appointed an Attorney for Personal Care, or been assigned a legal guardian or representative, likely your SDM is a family member. Use this hierarchy to determine your SDM:

If you’re married or common-law, your spouse or partner would speak for you. If you’re single, your parents or children (over the age of 16) would speak for you, and so on. In cases where your SDM is a group of people, such as your siblings, there’s no hierarchy. They all have equal right to speak on your behalf, and would ideally come together to make decisions. It’s worth noting that no one is obliged to act as an SDM. An SDM can refuse the role, and then the responsibility falls to the next in line.

If you have no living relatives over the age of 16, a Public Guardian and Trustee would speak for you.

Is this the person you would want to speak on your behalf?

Now that you know who your SDM is, ask yourself if this is the person you would want to be making life and death decisions for you. For example, 16 is very young. If your SDM is your 16-year-old child, you may want to spare them that huge responsibility, and choose a close friend instead. If your spouse is your SDM, consider who this role would fall to if you’re both incapacitated at the same time. Would it fall to an elderly parent? Perhaps you want to appoint a sibling as your alternate SDM.

You can change your SDM by appointing an Attorney for Personal Care. A lawyer can do this for you, or you can download this free kit from the Ministry of the Attorney General. Before you draw up the papers, sit down with whomever you wish to appoint and ensure that they understand what the role entails.

If you do appoint an Attorney for Personal Care, it’s crucial that you tell your family and healthcare team. It’s also a great idea to carry a card in your wallet stating “I have appointed (name) as my Attorney for Personal Care” along with their contact details. Otherwise, the hospital staff may default to the SDM hierarchy.

Have you had a conversation with this person about your wishes?

Knowing who will speak on your behalf is only part of the planning. You also need to have a conversation with your SDM to provide them with some guidance around your wishes. Maybe you have strong beliefs about feeding tubes and organ donation, maybe not. Of course, we can’t foresee every possible scenario, but we can discuss our feelings about life-prolonging interventions, quality of life, and what makes a good life. Your SDM is your advocate when you are at your most vulnerable. Help them to help you.

There are a number of excellent resources to guide this discussion. For people living in Ontario, here’s one that you can complete online or download for free.

Need more help?

I’m just beginning my practice as a Community Deathcare Educator and End of Life Doula. I’d love to gain some experience helping people with their Advance Care Planning. For a limited time, I’ll be offering complimentary 30 minute Skype sessions to talk through some of these questions. If you’d like to schedule a session with me, send me an email.

Image © 2019 Erin Bidlake

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