Today, April 16th, is Advance Care Planning (ACP) Day. For some folks, that might prompt the question: What is Advance Care Planning, and how is it different from Aging & End of Life Planning?
What is Advance Care Planning?
Aging & End of Life Planning—the thing we talk about the most here at Viive—is a big umbrella. It includes all of the legal and financial stuff that most people think of when they think about Estate Planning: writing and updating your Will, setting up trusts, charitable giving from your Estate, and more. It also includes all of the fun family dynamics and relationships to navigate.
But ACP represents another crucial part of the puzzle: planning for your future healthcare needs. Planning financially for your retirement and eventual death is obviously very important, but we can’t forget about all the stages of life that surround those two events. ACP is the process of reflecting on what’s important to you in your life, learning about the various options available to you in terms of future health care, and (crucially) communicating your wishes to the people who care about you.
Expecting the unexpected
If you’re lucky enough to live a long life, it’s very likely that your healthcare needs are going to grow over time. That much is to be expected.
But ACP is also about planning for the things you can’t predict—like serious accidents or illness. If anything ever happens to you that prevents you from making important decisions on your own, your ACP will be an invaluable guide for your family and loved ones, helping them understand your wishes and preferences and setting out a plan for them to follow. It will also help ensure that your healthcare providers understand your values and needs.
The ACP crisis
According to our friends at Advance Care Planning Canada, as of 2024, the vast majority of Canadians believe that it’s important to document one’s health and personal care wishes—but only 17% have actually done so.
Why is this gap so big? There are probably a few different reasons for this. For starters, Advance Care Planning is one of those things that most of us feel comfortable putting off, well, pretty much forever. It never feels like an urgent task, because we assume we’ll have plenty of time before we’ll ever need a document like that.
But another important reason for the ACP gap is likely that people don’t realize how difficult it is to make healthcare decisions on another person’s behalf. There are so many ethical, legal, financial, cultural, and logistical considerations that come into play when somebody is incapacitated, and the average person just doesn’t know how important an ACP is in navigating these situations.
Some sample scenarios
So, what kinds of decisions might you have to make as part of your ACP? Obviously, everybody’s situation is different. If you have been diagnosed with a chronic condition that could worsen over time, you’ll want to make a plan considering how your health is likely to change over time; otherwise, you may just want to cover your bases in terms of emergency situations that could potentially occur.
To give you an idea of what the contents of an ACP can look like, below we’ve written a couple of prompts, inspired by real stories on the ACP Canada website. Read through them and ask yourself: What would you do in this scenario? What values are most important to you? Do your loved ones know what’s most important to you in situations like these?
Scenario 1: Choosing mobility or cognition
Imagine you received a diagnosis of Parkinson’s Disease. There are drugs available that can help to reduce the physical effects of Parkinson’s, preserving people’s mobility for longer. But the drugs can sometimes come with cognitive side effects like brain fog, memory loss, and confusion.
Would you prefer to take the drugs, knowing they might make your mind less sharp? Or would you refuse the drugs, knowing that means your tremors and mobility issues will get worse faster?
This is John’s story. For John, being able to walk and be in the world with his family was more important than staying sharp. He chose to take drugs for his Parkinson’s, and he sat his wife and children down for difficult conversations to tell them that this was his choice.
Had John not reflected, made a decision for himself, and communicated his wishes, his loved ones might have been left wondering what to do after John was already suffering from cognitive symptoms. That’s not a position anybody wants to be in. Plus, John writes that he found great comfort in taking ownership of his health:
“Looking back, creating that advance care planning was one of the best decisions I ever made. It gave me a sense of control in a situation that often felt overwhelming and out of my hands. It allowed me to communicate my values and preferences clearly, sparing my family from unnecessary stress and confusion.” — John
Scenario 2: After the crash
Imagine you’re driving to work one morning when you lose control of your car. You end up in a serious crash, and need to be taken to the hospital. In the few days after the accident, you’re in a lot of pain, disoriented, confused, and panicked, not to mention being put on heavy painkillers.
Will your loved ones know how to advocate for you in this scenario? How do you think they’ll feel, navigating this emergency without a guide?
This is exactly what happened to Dr. Amy Tan when she was just 24 years old. Young, healthy, and newly married, she didn’t have an ACP or any kind of directives in place. Although she was very lucky to survive the crash, her husband was left in the terrible position of having to navigate a medical system he didn’t understand, make decisions for her while she was incapacitated, and assume responsibility for her health.
Dr. Tan’s story is a reminder that ACP is important for everyone, no matter how young or healthy. It’s also a powerful testament to how having an ACP can help protect the people you love from unnecessary fear and stress, in situations that are already incredibly difficult.
“It is never too early to complete your advance care plan until it’s too late. Please do this NOW so that those you cherish the most will never have to be in the position I unwittingly put my dear husband in.” — Dr. Amy Tan
Final thoughts
Let’s face it: ignoring our mortality is only human. Illness, injury, and death all feel like distant possibilities, until they’re not.
Advance Care Planning can be daunting, but it’s well worth your time. Just follow ACP Canada’s five steps:
- Think about what is important to you.
- Learn about the care you want.
- Choose decision makers that you trust.
- Share your wishes and preferences so the right people know what you want.
- Record your preferences and decision maker(s).
For more guides on how to start the ACP process, visit the ACP Canada website, or book a call with a Legacy Coordinator here at Viive.
