Advance Care Planning: 5 Steps to Your Personal Plan

“What would your family member want?” As a health-care provider I have witnessed patient health crises in hospitals, in their homes and in supported care settings. Some crises are predictable. Some are not. Inevitably, we as health-care providers turn to those closest to the patient and ask what to do.

“Did we do the right thing?” I have listened as my family and friends reflect on health care decisions they made on behalf of their parents, siblings, partners and friends. Some decisions made 40 or 20 years ago. Others, last year.  

I’d like the chance to have us all rewrite these stories. 

What is advance care planning? How does it relate to future health care decisions?

Advance Care Planning is a personal planning process. It helps you think about your life — what your values are, what a good day looks like for you, what brings you joy and what brings your life meaning. It is a process that can start at any age or stage of life, and should start when we are young, healthy adults. 

The daily choices we make, whether we recognize it or not, are based on who we are and what matters to us. What we make for dinner, if we make dinner, our hobbies and who we spend time with, tells us and those around us a bit about ourselves and our values. 

When we face diseases and illnesses, the health care decisions we make add to our life stories. Our life stories are unique — and the health care decisions we make are individualized — or they can and should be. 

Let me provide an example:

• Two people are offered the same surgery. One person’s goal is to continue running half marathons and another person’s goal is to continue walking a few blocks to meet friends for coffee. Do they both make the same decision for surgery? Maybe. Maybe not. I hope this helps us begin to understand how what matters to us affects the health care decisions we make.

How do I “do” advance care planning?

Canadians are lucky for many reasons. One is our national strategy for Advance Care Planning. Experts from across our country meet regularly to collaborate, develop and share resources. One collaborative project resulted in 5 Steps of Advance Care Planning. Consistent and recognizable Canadian Advance Care Planning steps:

Let’s walk through the five steps. 

*The following is from Fraser Health’s My Voice in Action workbooks (see resource section). Thank you to the FH ACP Team and various community partners for collaborating and making these workbooks possible. 

Some Tips: Take your time. You do not need to do all the steps at once. In fact, depending on where you are in your life and health journey, you may only do a few steps now and a few more later on. You may realize you need more information from your doctor or health-care team. You may want to talk to your friends and others that matter to you more. You just may need a bit more time. Sometimes we just need a bit of help. Throughout this article, tip boxes for support people are included.

Step 1: THINK 

What matters to you? What do you do for fun? What makes you happy? What or who influences your life? What is important for your mental and physical health?

Some examples might be:

• Practicing my spirituality.
• Spending time outdoors or indoors with my friends or being by myself.
• Eating my favourite food.

Caregivers and Support People Tip

Step 1: THINK

Identifying values can be challenging. Helping someone else with this process can be even more difficult. So, asking the right questions or providing prompts can be especially helpful. Think about and share what things you have observed them do that brought them joy or meaning. 

Try not to speak for the other person — remember that our values are unique and individual so there is no need to judge or question what is important to them. 

Values and beliefs are neither right nor wrong.

Step 2: LEARN

What health conditions do I have, if any? What treatments might I face now or in the future? What do I know about different health care treatments? How do I make health care decisions? How much do I want to know about my health?

Some examples might be:

• I want to know everything about my health or I want to learn a little at a time.
• I usually make decisions with my faith and extended community or by myself.
• I want to be better informed about life saving treatments, when these are offered and when they might not be.

Caregivers and Support People Tip

Step 2: LEARN

People with early stage disease or mild symptoms after a health issue often experience anxiety about their diagnosis and the limitations it has caused. It’s important not to dismiss these feelings — instead use it as an opportunity to establish yourself as someone they can really talk to: “Tell me more …”

Thinking ahead about treatments is important but there may come a time when the care they want is not right for them.

Step 3: DECIDE

There may come a time when you cannot make your own health care decisions. This can happen slowly or suddenly. It’s important to think about who you would want to communicate your decisions if you couldn’t. Who would you want that person to be? Think about, who do I talk with about important things? Who knows me best? Could they honour my wishes?

Some examples might be:

• I would want the person communicating my decisions to know me well, respect me and those I surround myself with.
• I would also want them to be able to be calm in difficult situations, talk easily to others and be my advocate.

*Some things to consider*:

• Does my province or territory have laws about who can and will make my health care decisions for me if I couldn’t?
• Is there a predetermined list of people?
• Are there forms or paperwork I should know about?

Caregivers and Support People Tip

Step 3: DECIDE

*Laws in this area differ across the country.* 

For some adults, they might not have any close friends or family in their lives. Or sometimes, the people involved are not able to fulfill their roles to make substitute health care consent decisions.

See resource section for provincial and territorial information. 

Step 4: TALK

Talking while you are doing okay is the best time. Keep talking — what’s important to you may change over time. Sharing information ahead of time helps the people who matter to you make the right health care decisions in the moment they are needed.

Some examples:

• Talking this over might be done best when I am out for a walk with my friends.
• I need to make sure my next door neighbour and my brother know my wishes.
• I will put a note in my calendar to review my thoughts and wishes with everyone every year.

Caregivers and Support People Tip

Step 4: TALK

Some people will experience steady decline of their disease but symptoms are not always the same all the time. Use those good days or moments of clarity to have conversations.

Conversations should be short and simple, but also frequent.

Having this conversation and doing your own advance care planning is important for you too.

Step 5: RECORD

Recording your thoughts and feelings is a helpful reminder in case someone needs to make a health care decision for you.

Some examples:

• I’m going to write a letter (or record a video) about what is important to me, what I value and some thoughts I have about a few health care treatments.
• I’m going to give the letter (or video) to my three adult children, their partners and my grandchildren.

*Some things to consider*:

• Does my province or territory have laws forms or paperwork I should know about?

Caregivers and Support People Tip

Step 5: RECORD

*Laws differ across the country*

Talk with your local health-care team about processes they have in place to store this information in their setting.

Let’s rewrite stories. 

As health-care providers, let’s ask questions like:

“Tell me about your family member. What’s important to them? I want to support you to make decisions they would make that aligns with what they value.”  

As family and friends, when we reflect on health care decisions we made on behalf of our parents, siblings, partners and best friends — 40 or 20 years ago, or last year — we will say, “I know we did the right thing.” 

Stay tuned for the next article: What are Substitute Decision Maker Roles and Responsibilities? How do I choose one? How can I be one?