Learning Journeys

The Supportive Care Collaborative shares lessons from community partnership, education, and practice to help strengthen access to palliative care and advance care planning. Our work is grounded in real relationships with community organizations, clinicians, and residents. Over time, it has generated practical insights that we believe are worth sharing more broadly. We share what we are learning so others can build on it, adapt it, and strengthen support for people living with serious illness in their own communities.

Learning Journeys: What We Learned from Community About Advance Care Planning

Between 2020 and 2021, we engaged approximately 550 people across San Francisco in a community-driven effort to strengthen advance care planning. Working with community leaders, members, and researchers in Black, Chinese, and Latino communities, we set out to understand the barriers people face, identify what works, and develop educational approaches that could better support people of color in engaging with advance care planning.

The process was led by community members themselves. Three community workgroups designed and hosted pilot events across trusted neighborhood settings, from senior centers and churches to community organizations and small businesses. Their work produced meaningful results. Advance care planning engagement increased in all three communities, with statistically significant gains in the Chinese and Latino communities. More than 90% of participants said they felt comfortable attending the events, and nearly all said they would recommend them to others.

What made the difference was not just what was taught, but how and where. When education is rooted in community trust, shaped by cultural values, and delivered by people with shared lived experience, people engage. That insight is at the heart of everything we have built since.

What We Learned

Across all three communities, several lessons emerged consistently.

People are more likely to engage in advance care planning when outreach and education happen in places they already trust, led by people they already know. Churches, senior centers, small businesses, and community organizations all served as powerful venues when events were led by trusted community voices rather than outside experts.

Framing matters. Across all three communities, the message that resonated most was not about death or paperwork. It was about family. Advance care planning helps families. It reduces burden on the people you love. It gives your loved ones the guidance and permission they need to honor your wishes. That message cut across community lines.

Culture is not a detail. It is the foundation. Each community had its own language, traditions, and entry points. The Chinese workgroup developed a new tool called The Precious Blessings: The Conversation, grounded in a millennia-old concept of a peaceful death in old age. The Latino workgroup used the language of “deseos” or “wishes” and incorporated imagery tied to Día de los Muertos. The Black workgroup wove financial planning and intergenerational wealth into the conversation, recognizing that for many Black San Franciscans, advance care planning is inseparable from questions of dignity, agency, and economic survival.

At the same time, none of these communities are monolithic. Immigration status, generation, religion, gender identity, sexual orientation, and economic status all shape how people think about and engage with advance care planning. Effective outreach requires targeted approaches for different constituencies within a community, not a single message for everyone.

Peer learning and storytelling are among the most powerful tools available. Across all three communities, people were more likely to engage when they heard from someone who shared their experience. Peer-to-peer conversation, personal testimony, and intergenerational dialogue all proved more effective than presentations from outside experts alone.

Finally, there are good tools available, but more are needed. The workgroups identified a number of culturally and linguistically tailored resources that worked well. But communities also felt the need to create new materials that better reflected their specific cultures, values, and lived experiences. The resources we feature in this section emerged in part from that finding.