Welcome to the Speak Up Podcast! This is the first episode "What if? Let's Talk About Advance Care Planning"

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In this episode of Speak Up, we discuss the “what if?” questions about Advance Care Planning. This episode is hosted by Brianna Hammond, the Project  Assistant at Canadian Hospice Palliative Care Association and she is joined by our guest speaker, Mary Ann Murray, the Director of Advance Care Planning in Canada.

Mary Ann completed a PhD in Nursing in the field of Evidence Informed Decision Making in Nursing and Health Care followed by a Canadian Health Services Research Foundation post-doctoral fellowship with the University of Ottawa and University of McGill. Her research focuses on exploring and promoting shared decision making and evidence-informed practice for patients living with end stage chronic illness and complex multi-system disorders.

This episode of the Speak Up podcast is edited by Aia Raafat, the Communications Officer at Advance Care Planning in Canada.

Read podcast transcript here:

Brianna: Hi everyone. I’m Brianna and I’m the Project Assistant of the Advanced Care Planning in Canada initiative and today we’re going to be talking about Advanced Care Planning and what that means. I’m sitting here with Mary Ann who’s the director of the initiative and hopefully we’ll have some fun!

Mary Ann: When we talk about Advance Care Planning what is that? Well really it’s a process it’s about having a conversation and before the conversation reflecting and thinking about what’s important to you? What are your values? What will your wishes be? And then having the conversation with people who are close to you or people that it would be important to know about what your personal values and wishes would be for your health and personal care, if there came a time when you weren’t able to speak for yourself. So it really is about having discussions, conversations with your family and friends, and particularly with someone who’s called your substitute decision-maker. That’s a person who would speak for you if you were not able to speak for yourself. So you can have the conversation in person and you can also write down your thoughts and your wishes and then store that in a safe place so that should that time come when you couldn’t speak for yourself, your family, your friends, your substitute decision-maker will know where to find your documents and how to help you in the best way possible.

Brianna: Thanks Mary Ann. I think that’s so important and another thing to remember is that this process of Advanced Care Planning isn’t just for those who are aging or diagnosed with an illness but also for young adults and people who are healthy. So I’m wondering what are some questions that people typically ask before they engage in Advance Care Planning?

Mary Ann: So why don’t we actually listen to what people have to say? What are the voices out there? What are the kinds of questions people are asking?

Brianna: Absolutely! Here we go.

Multiple Voices: What if the unspeakable happened? What if I were to ill or some accident made it impossible for me to speak for myself? What if instead of spending time comforting each other and being with me, my family was in conflict? What if my family wasn’t sure about what I would want? What if the unspeakable happened? What if my family had to make decisions about my care and treatments?

Brianna: Definitely some important questions and I think it really shows how this is a really big topic and it really applies to everybody. If you haven’t had these conversations with your loved ones and if you haven’t created an Advanced Care Plan whether that’s talking about it or writing it down, any of these scenarios could happen to you and you could find yourself asking these questions. Advance Care Planning is about thinking about your future health and personal care and how that fits into your values, your preferences in your own unique situation. It’s about sharing your thoughts with people that you care about and naming someone you trust to speak for you also known as your substitute decision-maker.

Mary Ann: That’s right Brianna. Actually the Canadian Hospice Palliative Care Association recently asked Canadians what they thought about Advance Care Planning and they talked to people across the country and all provinces and then all of the territories and what they found was actually very surprising. That more than 90% of Canadians say that talking about their wishes and their preferences for care is really really important. However, less than a third of people have actually had that conversation with their families and fewer than 20%, so that’s less than one in five people, have actually made an Advance Care Plan. So people think it’s important to do, but we certainly haven’t seen that behavior match that. So what we really want to do is raise people’s awareness. Get them thinking about what is Advance Care Planning and making it a normal part of life, a normal part of what you do to be prepared for living well.

Brianna: That’s all really interesting. I’m surprised it’s so few Canadians have done Advanced Care Planning considering how many of them feel that it’s an important thing. So if you’re someone who’s interested in learning more about how to do an Advance Care Plan, there are actually quite a few tools and resources. There’s even a workbook online that you can access and it helps you reflect and you can flip through and see what you might want to write down as your values and wishes. You can access those resources at www.advancecareplanning.ca.

Mary Ann: These are really great resources easy to use, easy to share, easy to complete. So when you actually start working through some of these questions, you might find the answers that you are looking for. You might find unexpected answers and you might find that you have even more and different kinds of questions. By having an Advanced Care Plan, you can change the story to something very different.

Multiple Voices: What if I had made an Advance Care Plan? What if my loved ones were able to spend time comforting each other and being with me because they knew they were honoring my wishes and voice? What if I shared my wishes and values? What if I had made an advance care plan? What if I were to ill or sudden accident made it impossible for me to speak for myself? What if my family knew where to find my advanced care plan and shared my wishes with my health care providers? What if I made an advance care plan?

Brianna: So thank you to everyone who is listening. We really enjoyed having you here with us and thank you Mary Ann for having this conversation today. I’ve really enjoyed it. If any of you want to reach out? If this has kind of brought something up within you? You want some more information or you have questions or you want to share your story with us? Please do reach out. You can find us on the website or you can email us at info@advancedcareplanning.ca. We also have social media accounts, Instagram, Facebook, and Twitter, where you can find us and engage there. This has been the first episode of the Speak Up podcast. Thanks again for listening.

More podcasts coming soon. Stay tuned!