Case Study
San Francisco Palliative Care
Overview
The Objective: Increasing Access to Quality End-of-Life Care for the Latinx Community
Living with dignity in all stages of life is a human right. One of the most difficult times in a person’s life can be if they have a severe illness, are at the end of their life, or require palliative care. Advanced health care directives (AHCD) are a powerful tool in putting the patient’s desires and needs at the center of care during those difficult times. Utilizing AHCD as a tool for communication between patients, loved ones, and doctors levels the playing field for access to equitable health care and support. While studies show that patients who complete and communicate an advanced health care directive are more likely to have their desires honored by an increase of 30-86%, a study published in 2021 found that 75% of Latinx respondents shared that they were unaware of this type of planning.
I partnered with the San Francisco Palliative Care Working Group to design a culturally responsive event for Latinx patients in San Francisco with a serious illness or in need of end-of-life care.
The Approach: Community-Designed Solutions for Patient-Centered Care
We began the project by gathering data through 1:1 interviews, surveys, and focus groups. The project’s original plan was to use the data to develop an event and prototype a culturally responsive engagement about understanding and completing an Advanced Health Care Directive. During the focus groups, participants expressed much enthusiasm for the topic that we revised our strategy. So instead of designing an event ourselves, we invited focus group participants, other community leaders, and artists to design events that would address the barriers we found in our survey and listening. These teams and leaders developed a variety of culturally-appropriate engagements to inform and support the community in end-of-life planning with a focus on writing an Advanced Health Care Directive (AHCD) (see below for a full list of the design team and supporters of this work).
When utilizing community-based participatory research, adequate time for planning, training and resources will significantly deepen the quality of the outcomes. In addition, to honor the labor and wisdom, and effort of the community through compensation and acknowledgment of their leadership.
Outcome
Community design teams reviewed the data from surveys and focus groups, identifying key barriers to establishing and communicating an AHCD. They then developed five prototypes to engage the Latinx community in developing AHCDs.
The Journal of the American Geriatrics Society summarized the process and research in our work “Advocating for what we need”: A CBPR approach to advance care planning in the Latinx older adult community,” citing that “This study describes a feasible, acceptable, and effective CBPR ACP intervention. Co-developed community events represent a promising approach to reducing disparities in ACP among the Latinx population.”
"Based on feedback from event participants and facilitators, next steps include refining the pilot interventions and incorporating them into routine meetings held by partnering agencies to promote sustainability. Our findings also identify necessary areas of further research, including further exploration of ACP among Latinx immigrant and LGBTQI+ populations."
Community Design Team & Leaders
This work was driven by and would not have been possible without the leadership of the Latinx Community Committee Co-Chair Sandra Rivas, Latinx Community Committee members (Claire Bleymaier, Elyse Nichole, Gloria Bonilla, Linda Murley, Alyssa Erickson, Joana Mattero, Maria Bermudez), additional members of the Latinx Design Team (J. Antonio Aguilar-Karayianni, Jesus Guillen, Cecilia A. Rodriguez, Gilberto Diaz, Dr. Martina Ayala, Robin Varguez, Diana Lara-Rodgers), volunteers (Michelle Lopez, Melissa Bravo, Lupe Duran, Maggie Lopez, Cecilia Pena, Joshua Diaz, Aaron Diaz, Diego Gambala, Alex Balmaceda, Stephanie Galante), William “Donnie” Nelson, Rachel Lovett, Molly Wertz, the San Francisco Palliative Care Workgroup Steering Committee (Jeffrey Newman, Kelly Dearman, Anni Chung, Bridget Sumser), and partnering organizations La Raza Centro Legal, Family Caregiver Alliance, Aguilas, On Lok 30th Street Center, and El/La Para las Translatinas.