Advance Care Planning in Canada: Why Your Wishes Don’t Always Travel with You

Advance care planning (ACP) is a process that allows individuals to reflect on, share, and document their preferences for health and personal care in the event they become unable to make or communicate decisions themselves. Across Canada, ACP is recognized as a crucial part of patient-centered care, helping ensure that people receive treatment aligned with their values and goals. Yet, despite the growing awareness of its importance, a critical gap persists: ACP documents often don’t “follow you” across health care systems, hospitals, or even provinces. 

This lack of portability creates a range of challenges for patients, families, and health care providers, reducing the effectiveness of advance care planning and sometimes undermining the very purpose of documenting one’s wishes. 

 

Understanding the Problem: ACP Documents Are Localized 

Most people in Canada who engage in ACP do so by completing an informal document such as an ACP Guide offered by CHPCA or a provincial hospice palliative care association or a formal document such as an advance directive, personal directive, health care directive, or power of attorney for personal care. These documents can include instructions about what medical treatments a person does or does not want and/or appoint someone to make decisions on their behalf. 

While formal tools are legally recognized within their home province or territory, they generally exist outside the digital health infrastructure. This means: 

• If a person travels, moves to a new province, or receives care in a different hospital, the document may not be automatically available to the clinicians providing care. 

• Health care providers often must rely on families or the patient themselves to present the ACP documents physically. 

• Even when hospitals have electronic medical records, there is usually no standardized way to integrate ACP documents from other jurisdictions. 

The result is that ACP documents, which were intended to ensure a person’s wishes are respected, can effectively become inaccessible precisely when they are most needed. 

 

Consequences for Patients and Families 

The portability gap has very real implications: 

1. Delayed or Inconsistent Care 
   If health care providers cannot immediately access a patient’s ACP documents, treatment decisions may be made without full knowledge of the person’s preferences. For example, a patient may receive interventions they explicitly refused in their directive simply because the document was unavailable at the hospital bedside. 
2. Increased Emotional Stress
   Families who know about a loved one’s advance care planning (ACP) documents may still face a difficult situation if healthcare providers do not have access to them. Without these documents on file, families may need to advocate for decisions without formal support, which can add emotional and ethical stress during an already challenging time. 
3. Potential Legal Conflicts
   ACP documents may have varying legal recognition across provinces. A directive valid in one province may not be considered legally binding in another without adherence to local requirements. Families and providers may struggle to reconcile these differences when urgent decisions are required. 
4. Reduced Confidence in Advance Care Planning 
   The knowledge that ACP documents are not always accessible may discourage some people from completing them. If people in Canada feel their documented wishes might be ignored, they may question whether ACP is worthwhile. 

Why Documents Don’t Follow You 

Several systemic factors contribute to this problem: 

• Fragmented Health Care Systems: Canada’s health care system is managed at the provincial and territorial level. Each jurisdiction has its own legislation, forms, and definitions for ACP documents, which makes cross-jurisdiction recognition difficult. A person’s ACP document may not be immediately accessible if they receive care at a different hospital within the same province. 

• Paper-Based Legacy Practices: Many ACP documents are still completed on paper and stored in a person’s home or in hospital files, rather than digitally. Paper documents are inherently limited in portability. 

• Lack of Standardization: There is no national standard for naming, formatting, or storing ACP documents. As a result, even electronic directives may not be compatible across different health care systems. 

• Privacy and Security Concerns: Sharing sensitive health information across jurisdictions requires careful attention to privacy laws. Without secure, interoperable systems, hospitals and providers may hesitate to access ACP documents from outside their immediate network. 

Potential Solutions 

Addressing the portability problem requires both technological and policy solutions: 

1. Centralized ACP Registries
   Some provinces have begun exploring centralized registries where residents can upload their ACP documents. These registries allow authorized health care providers to access directives securely, ensuring the documents are available wherever care is delivered. 
2. Integration into Electronic Health Records (EHRs) 
   Incorporating ACP documents directly into digital health records could allow hospitals and clinics to access patient wishes automatically. Interoperable systems could enable cross-provincial access while maintaining security and privacy standards. 
3. Standardization of Terms and Forms 
   Nationally aligned terminology, forms, and guidance can reduce confusion and improve the likelihood that ACP documents are recognized and followed outside the home jurisdiction. 
4. Public Awareness and Education
   People in Canda should be encouraged to not only complete ACP documents but also understand how to ensure they are available to health care providers when needed. This includes discussing preferences with loved ones and health professionals and knowing local registry options. 

 

Examples and Emerging Practices 

Some Canadian provinces have already taken steps toward better portability: 

• Alberta has a provincial ACP registry that allows authorized providers to access submitted directives electronically. 

• British Columbia offers guidance on integrating ACP documents into hospital electronic records. 

• And others are exploring ways to make ACP documents more easily shared across care settings through digital health and electronic health record integration. 

While these efforts are promising, most provinces and territories do not yet have fully integrated systems, and national portability remains limited. 

 

The Broader Implications 

The fact that ACP documents often do not follow patients highlights a key tension in Canadian health care, while:  

• ACP is legally and ethically recognized,  

• 82% of Canadians believe that recording their wishes would help take the pressure off their loved ones, 

• 77% of people in Canada agree that having an advance care plan makes them feel relieved,   

practical access to directives is inconsistent. This undermines one of the main purposes of advance care planning, ensuring that individuals’ preferences are known, respected, and acted upon. 

For health care advocates, policymakers, and professionals, improving portability is not just a technological issue, it is a matter of patient-centered care and equity. Without reliable access to ACP documents, vulnerable populations, frequent travelers, people who move across provinces, and people who become unable to communicate for themselves without notice may be at greater risk of receiving care that does not reflect their values. 

 

Conclusion 

Advance care planning is an essential tool for ensuring that health care respects individual preferences. Yet in Canada, the lack of portability for ACP documents, both paper and electronic, remains a significant barrier. Documents that are legally valid in one province may be inaccessible or unrecognized elsewhere, creating challenges for patients, families, and health care providers alike. 

The solution lies in a combination of policy reform, technological innovation, and public education: 

• Centralized ACP registries to make documents universally accessible to authorized providers, 

• Integration into electronic health records to ensure ACP information travels with patients, and 

• Nationally standardized forms and terminology to reduce confusion and ensure recognition across jurisdictions. 

By addressing these challenges, Canada can ensure that ACP fulfills its promise: giving every individual confidence that their health care wishes will be known and respected, wherever they receive care. 

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ACP Day takes place every year on April 16. Find out how you can participate and to learn more about advance care planning and how you can take charge of your future care and ease the burden on those close to you who might otherwise face difficult decisions on your behalf, visit https://www.advancecareplanning.ca/programs/acp-day/

Advance Care Planning (ACP) Canada initiative is led by the Canadian Hospice Palliative Care Association (CHPCA) that aims to help people living in Canada prepare for their future and health and personal care.