Making advance care planning accessible to everyone

Co-designed inclusive, accessible ACP guides support diverse Canadians, especially those with disabilities and prioritize usability, engagement and compliance with accessibility standards.

Advance Care Planning (ACP) is the process of thinking about and communicating your wishes and preferences for future health and personal care. The concept of ACP is evolving across Canada. As laws shift to a more open and inclusive view of what it means for a person to be able to express their wishes and preferences, our approach to ACP must also shift from an end-of-life model to a more open and inclusive life planning model.

The Healthcare Human Factors (HHF) design team partnered with the CHPCA to reimagine how an ACP guide might better serve the needs of all Canadians, particularly people living with disabilities whose voices have historically been excluded from conversations about their care.

Using a human-centred design approach, the HHF design team sought to understand the needs of a wide diversity of people in order to then design an accessible and usable ACP guide. Through interviews followed by exploratory and co-design workshops, our team engaged with ACP educators, healthcare providers, and people with lived experiences who had either created their own ACP or supported others in creating theirs.

Our engagement with people living with disabilities and professionals in the disability and inclusion space allowed us to develop a comprehensive understanding and recognition of ableist and exclusionary practices, both within our own approach and embedded within the ACP guide itself. By recognizing that all people have a range of abilities and limitations, we understood that designing for the needs of people living with disabilities would inherently cater to a broader range of users.

Our project guiding principles highlighted our key learnings:

• People want support translating their wishes into choices. A guide should encourage action and prompt next steps.
• People want to be able to find the right information at the right time. A guide should support knowledge building and provide needed information.
• People want guidance exploring what matters most to them. A guide should prompt reflection and help people capture their authentic wishes.
• People want information that matches their individual needs. A guide should provide information in many different ways and support inclusion and diversity.
• People want help building mutual understanding with those who matter to them. A guide should invite collaboration and conversation while helping people find their support networks and align with their decision supporters.

Through this work we learned that ACP is a journey and people will come to this journey with varying levels of knowledge about what ACP is and their own self-awareness around their own needs and wants. The new ACP guide meets people where they are and supports the diverse ways in which they may choose to embark on their own individual journey.

The new ACP guide was designed to be a warm welcoming presence that could provide foundational information and guide people through their ACP journey. The guide supports people as they explore their values, wishes, and preferences, build their support network, share their wishes and preferences and record their plan.

Stories, activities and graphics support engagement throughout the guide, providing opportunities for learning and exploring. The structure was adjusted to improve content flow and coherence, along with engagement and clarity. The language was revised to improve readability and comprehension. Whether used as a paper or digital document, the guide is accessible, interactive, and will result in an ACP record that can be shared with supportive people.

The guide was developed to support both digital and analog accessibility. The digital PDF is a screen reader-friendly document. Testing for screen reader compatibility was conducted with the most popular free screen reader softwares: JAWS and NVDA for Windows PC; and VoiceOver, an internal feature included with Apple devices.

The guide was designed to exceed AODA standards. Colours were tested for contrast ratios and font styles and sizes were selected for improved readability. In addition, white space was prioritized to ensure that content remained easy to read and engage with.

The digital file has been developed to be home printer friendly. Large colour blocks were largely avoided, and ACP Record pages were formatted to be easy to isolate and print or save.

Based on the initial positive reception to the guide, the CHPCA expanded the project scope to design an accompanying mini ACP guide for people who needed less guidance, and an interactive activity bundle as a resource for ACP educators and community groups.

By considering the many ways people would come across and utilize ACP to express their wishes and preferences, we delivered complementary experiences that helped to make ACP more accessible to broader audiences. We translated the approach of the guide from that of an end-of-life framing towards a broader and more inclusive life-planning model. Through a shift in language, tone, and reflective prompts, the new content became more open, inviting, and relevant to people at any stage of life.

Legal terminology was updated to reflect the evolving national framework, aligning content with other successful ACP tools, and emphasizing ACP as an ongoing process, based on personal values, relationships, and community.

The guide was designed to feel warm and welcoming while providing foundational information that would guide people through their ACP journey. Stories, activities, and graphics support engagement and provide opportunities for people to learn and reflect.

Accessibility was an important objective throughout the entire project. The guide was designed to support the needs of people living with both physical and cognitive disabilities. Recognizing traditional ableist approaches, visuals, stories, and language was intentionally designed to be inclusive and represent a diversity of experiences. WCAG standards for colour, contrast and text size were present in all design decisions as was compatibility with screen reader devices and accessibility of the final document both in digital and analog formats.

The entire project was conducted through the lens of diversity and inclusion from beginning to final deliverables. This included not only the development of the final deliverable but also our approach to the entire process.

We began with a deep exploration of the experiences of a diverse representative group of people within the ACP space. We conducted virtual interviews using tools to support those with cognitive and physical disabilities. We shared questions in advance to support those with a need for longer cognitive processing times and ensure subtitles were enabled when needed.

We then moved into a collaborative solution phase, working with people across Canada to reimagine how an ACP guide could better serve the needs of people living with disabilities and Canadians on the whole. For each virtual workshop we pre-shared a screen-reader accessible document that enabled participants to prepare in advance of the sessions. Workshop sessions were conducted in small groups and facilitators ensured that each participant was able to engage in a way that supported their individual needs.

Additional research was undertaken to explore the expanded life-planning framework of ACP and the shifting legal landscape across Canada. Engagement with experts in the disability and inclusion space allowed us to learn, confront traditional ableist concepts, and adjust our approach as we progressed through the project. Regular check-ins with both the CHPCA and a broader group of ACP experts provided opportunities to collect feedback throughout the project and make sure we were headed in the right direction to ensure the final outputs remained inclusive and accessible to all Canadians from many different backgrounds.