Advance care planning: What you need to know

Have you started thinking about advance care planning? Do you know who you would choose to make decisions about your health on your behalf? If you haven’t started working on your plan yet, April — Advance Care Planning Month — is a great time to start. Dying With Dignity Canada is running a special advance care planning blog series throughout the month, with posts designed to guide you through different aspects of the process and introduce important things to consider.

In the first instalment of the series, Dying With Dignity Canada’s Education and Engagement Officer Maureen Aslin answers commonly asked questions about how to get started on your advance care plan (ACP) and dispels some misconceptions about ACPs.

What is an advance care plan (ACP)?

An advance care plan is a plan for future healthcare decisions if you are not able to speak for yourself. It is an opportunity for you to let others know what is important to you so they can make choices that respect your wishes. There are legal documents you may consider having in your plan, but it doesn’t even need to be written down, just communicated to your people: friends, family, anyone close to you.

What are some important things that people should know about the process of making an ACP?

The first step is deciding what matters to you, your beliefs and values, and what this means for your care choices. The next step is communicating all of this. Talk to your loved ones about what you want. Talk to your clinical care providers. Finally, if you have someone you want to speak on your behalf, learn how you can designate them as your decision-maker. This person is often a family member, but it may not be. You should choose the person you trust most or who knows you best.

Also, advance care planning is often associated with older people, but it is relevant to anyone of any age. You never know what might happen, and if you are incapacitated at any age, someone will be tasked with making decisions for you.

How do I choose who will serve as my substitute decision-maker/proxy/power of attorney?

You should choose someone you trust to act in your best interest, who is easily accessible, and you feel could make choices when under pressure in a healthcare setting. Though the terminology used will depend on the province, choosing the person who will communicate your wishes for end-of-life care is important.

What documents should someone start with in order to begin the ACP process?

Dying With Dignity Canada’s Advance Care Planning toolkit provides food for thought and a place to start planning. Pick the kit for your province and read the step-by step guide on how to document your wishes for care at end of life.

What is a “beliefs and values”-guided approach to ACP?

Historically, patient voice was less centered in care. ACP puts the person at the centre of decisions about their care. Now we are centering beliefs and values and communicating them at every stage of life in relation to advance care planning. This means asking yourself questions such as, “Do you value quality of life or quantity of life?” instead of specific medical interventions. Attempting to narrow down the medical procedures you want is difficult, as it’s nearly impossible to predict the context of every situation. If you are clear about the beliefs and values guiding your care, it will be easier for your substitute decision-maker/proxy/power of attorney to make decisions on your behalf to use them as guidelines.

I feel uncomfortable talking to loved ones about their wishes, or my own. How do I begin this conversation?

Start by talking about a story in the news, or about someone you know who had a good or bad death. Using these stories as a point of reference will depersonalize the issue so you can go into a little more detail as you feel comfortable. If it’s a more urgent conversation, you can begin by saying, “I went to the doctor,” or “I’ve been diagnosed with…” This will ground the conversation in the situation at hand.

What are some misconceptions around ACP that should be dispelled this month?

It can be difficult for people to engage in conversations about this topic for a variety of reasons. It is sometimes frustrating to learn you don’t have as much control as you want over your life and health. The law is still developing, so you might not be able to secure every decision you would like for your end-of-life care. For instance, many people want to be able to make an advance request for medical assistance in dying (MAID) if they have dementia or Alzheimer’s, which is not currently allowed.

However, it’s still critical to plan for what you can control. Advance care planning does allow you to take emotional care of the people around you. Your clarity in stating your wishes will go a long way in reducing situations of doubt, which can bring up complicated grief, ongoing guilt, and questioning of decisions for families and loved ones. So even though you might not be able to get exactly what you want because of the existing laws, there’s still a compelling reason to prepare your plan.

This month, we want to focus on the benefits of conscious decision making involved in advance care planning, instead of the “should” aspect of being forced to complete it. Something we would like to support is people’s comfort and literacy about how advance care planning can affect the way you live your life. These conversations and processes about the end of life can happen at any age and make your life better today.

Note: This blog post is not a stand-in for medical or legal advice. If you have questions, please reach out to your local DWDC chapter, national office or contact a legal professional in your province or territory.

This interview has been edited for clarity and content.