Who makes the decisions when you can’t speak for yourself?


        We plan for all types of events in our lives, such as birthday parties, marriage ceremonies, and vacations. We plan for our education and for our retirement. Although planning is something we seem to do a lot, we often forget to plan for health care. 

        Marilyn Kogon, a retired marriage and family therapist, is volunteering with Compassionate Communities Kingston to encourage people to plan for the type of health and personal care they might want if they were unable to speak for themselves due to an accident or failing health. This is known as Advance Care Planning or ACP.

         Planning an ACP involves talking to family members and friends about your wishes and choosing a Substitute Decision-Maker, someone you trust who can speak and make decisions on your behalf.

         ACP details can be written down in a document or simply expressed verbally to friends and family, says Marilyn.

         “For my own self, what I say [to people] is, if I don’t know any of my kids and I don’t know my grandchildren, I don’t know my loved ones, and they tell me I’m never going to recover, then do not do anything heroic for me,” she says.

           Marilyn experienced the importance of ACP when her mother, prior to being diagnosed with dementia, had spoken about a future care plan, which conflicted with the values of one of her three daughters. But all three wanted to respect their mother’s wishes, realizing this was for her, not them.

           Most people may think about what kind of care they want when they are sick “but it’s so much easier if they have actually said “this is what I want, this is what I need” before they get to that point, Marilyn says.

          “The reality is that it should be me who is in charge of my body to my last breath,” she adds.

            Through Compassionate Communities Kingston, Marilyn and other volunteers have been stressing the importance of Advance Care Planning mostly to older people, during sessions at the Seniors Centre and various churches and synagogues. “Our first goal was to go out and educate people, but we have a long way to go still,” she says.

            Parents make decisions about care on behalf of their children until they reach the age of 18. After that, everyone can − and should − have an ACP, says Marilyn. No legal documents or lawyers are required. Your decisions or wishes may change over time, and you can appoint a different person to be the substitute decision-maker if you want.

            “If you change your mind, it doesn’t matter,” says Marilyn. “It’s not a bad thing. It’s whatever you want to say. You speak for yourself until you can’t. And hopefully, you have told someone about your wishes and asked them to speak for you, should that ever become necessary ”

             Marilyn’s goal is to normalize planning an ACP. 

             “My hope is that everyone automatically thinks about it – that we soon start talking with younger people too.”


– Kristel Mae Chanfing, Newton Parreira Duarte Filho, Gertrude Faith Marie Talasan, Amala Biju, Sonia Paul and Merin Jollin


Advance Care Planning – Speak UP! – https://www.advancecareplanning.ca/

Substitute Decision-Makers: https://www.speakupontario.ca/resource-guide/part-2-substitute-decision-makers/

For more information regarding Advance Care Planning and Compassionate Communities Kingston, visit: https://compassionatekingston.ca/


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