John was an active and independent man in his late fifties when he was diagnosed with Parkinson’s Disease. One of the first things he learned about his illness was that the Dopaminergic medication he would need to manage his physical symptoms could impair his thinking. He realized the day could come where he would have to make a choice. Mobility or mental clarity.
For John, the choice was simple: Walking – being able to move, to maintain some autonomy –was more important than having a sharp mind. When he talked to his family about it, he was surprised to learn they had assumed the opposite.
That’s when he decided to create an advance care plan. It was simple but powerful, stating that if there came a time when his family or medical team had to choose between mobility or cognitive sharpness, he wanted them to prioritize mobility.
As John wrote:
“‘At first, there were tears. ‘Dad, are you sure?’ My daughter asked. ‘What if you can’t recognize us?’
‘I might not always recognize you,’ I admitted, ‘but I’ll still be me. And if I can hold your hand and walk with you, that’s what matters to me.’
My son nodded slowly. ‘I get it, Dad. You want to live, not just exist.’”
By making these choices proactively, he was able to maintain autonomy, ease the burden on his family, and ensure that his wishes were honoured. His story is a reminder that planning is not just about medical decisions – it’s about dignity, self-determination and reducing unnecessary suffering.
Advance care planning (ACP) is a vital process of reflecting on, discussing and documenting preferences for future health care, ensuring individuals’ values, beliefs and wishes are respected, even if they cannot make decisions for themselves due to illness or injury.
Canadians overwhelmingly agree that ACP promotes patient autonomy, reduces stress for families and facilitates better care coordination, with 93 per cent saying it’s important to discuss their future care with family and friends.
Through ACP, individuals can proactively outline their health and personal care priorities, ensuring their voices are heard in critical moments and provide individuals and their families with a sense of control and reassurance, reducing uncertainty and stress during difficult times. Yet, despite the importance of these conversations, many people delay or avoid them altogether.
John’s experience is not unique. Every day, individuals and families face difficult medical decisions without clear guidance. According to a 2024 national survey by Advance Care Planning Canada:
- 80 per cent of Canadians say they believe it is important to have conversations about future health-care decisions.
- 82 per cent of Canadians agree that documenting their preferences would help relieve the burden on loved ones.
- 77 per cent agree having an advance care plan gives them a sense of relief that their wishes are understood.
- 80 per cent agree there is a need for more acceptance around sickness, death, dying and expressing health or personal care needs in our society.
- However, only 17 per cent have documented their wishes in an advance care plan.
These statistics highlight the gap between understanding the importance of ACP and taking action. The reluctance to engage in these discussions often stems from discomfort with discussing death, lack of awareness, or misconceptions about ACP’s role in health care.
There are several key obstacles that prevent people from engaging in advance care planning:
- Discomfort with End-of-Life Discussions: Many individuals and families avoid advance care planning conversations because they find them distressing or overwhelming. However, delaying these discussions can lead to confusion and conflict when critical decisions need to be made.
- Lack of Awareness and Resources: Many Canadians do not realize that advance care planning is not just for older adults or those with serious illnesses – it’s a proactive step that everyone should take.
- Accessibility challenges: For individuals with disabilities or those from diverse cultural and linguistic backgrounds, standard ACP resources may not be inclusive or relevant, further complicating the process of starting these discussions.
To address these barriers, organizations like Advance Care Planning Canada are working to provide accessible, inclusive, and actionable materials that encourage meaningful conversations about future care.
- Advance Care Planning Guides: Designed to encourage reflection and conversation, the new guides also meet specific accessibility standards with simplified text, larger fonts and proper colour contrast were used for easier comprehension.
- Easy Read Guide: Designed specifically for people with cognitive disabilities, this guide uses clear language, engaging visuals and a straightforward format to help individuals understand and navigate ACP with ease. The guide is scheduled for release this month.
- Supported Decision-Making Resource: A valuable resource for health-care professionals nationwide, this document – set for release in March – will explore the concept of supported decision-making. It will explain its significance, provide practical guidance and outline its application within the context of advance care planning.
- Legal Information: While ACP Canada Tools are not legal documents, the regional legal summaries provide clear, easy-to-read information to help individuals navigate the laws and regulations related to advance care planning in their province or territory. These summaries highlight essential legal considerations, such as documenting your wishes, appointing a decision-maker and ensuring your preferences are understood and respected.
Advance care planning empowers individuals to have their health-care preferences honoured, offering peace of mind to both themselves and their loved ones. Overcoming barriers like emotional discomfort, misconceptions and accessibility challenges can help shift the perception of ACP from a difficult conversation to a proactive and empowering step toward future care.
For more information, visit Advance Care Planning Canada’s website or contact us to learn how you can contribute to this work or participate in ACP Day on April 16.
