Why Our Work Matters

Why Our Work Matters


In California and across the country, people with a serious illness1 and those approaching the end of life endure unnecessary suffering. As of 2013, 25% of people nearing the end-of-life experience unmet needs for pain, 50% experience unmet needs for anxiety and sadness, and 14% had decisions made without enough input from themselves or their family2. This experience is like even worse for people of color. In a 2021 survey commissioned by the Stupski Foundation, it was revealed that the majority of decedents who did not have wishes or plans for end-of-life care were people of color.

Pie chart indicating 25%.
of the people nearing the end-of-life experience unmet needs for pain.
Pie chart indicating 50%.
experience unmet needs for anxiety and sadness.
Pie chart indicating 14%.
had decisions made without enough input from the family4.

Fortunately, there are existing solutions to improve care for people with a serious illness including palliative care and advance care planning. Unfortunately, not enough people know about the importance of palliative care and advance care planning, or how to engage and access these services. An estimated 71% of adults reported having never heard of palliative care, and communities of color often have even less awareness3,4. Additionally, even when people claim to know what palliative care is, their understanding can be inaccurate or incomplete, often conflating palliative care with hospice. For some people, these widespread misperceptions can be compounded by broader issues of mistrust resulting from institutional racism and other forms of discrimination within health care systems.

There is significant opportunity to address these challenges and enhance the uptake of serious illness care services by educating patients and families about the nature of these services, their benefits, and how to access them more broadly. According to a 2019 study commissioned by the California Health Care Foundation, when the type of services palliative care offers was described, 9 in 10 Californians expressed their desire for such care in the event of a serious illness, regardless of their race or ethnicity5.

Increasing awareness, acceptance, and ultimately the use of palliative care and advance care planning requires a multi-stakeholder approach. The San Francisco Palliative Care Work Group is making a significant contribution to this goal by actively engaging and educating patients and families, and by providing a vision and a unified framework to harness the capabilities of health systems, community-based organizations, faith-based organizations, and municipal government entities.

  1. A serious illness is a health condition that carries a high risk of mortality and either negatively impacts a person's daily function or quality of life, OR excessively strains their caregiver (Source: Kelley AS, Bollens-Lund E. Identifying the Population with Serious Illness: The "Denominator" Challenge. J Palliat Med. 2018;21(S2):S7–S16. doi:10.1089/jpm.2017.0548).
  2. Teno JM, Freedman VA, Kasper JD, Gozalo P, Mor V. Is Care for the Dying Improving in the United States? J Palliat Med. 2015;18(8):662–666. doi:10.1089/jpm.2015.0039
  3. Huo J, Hong YR, Grewal R, Yadav S, Heller IW, Bian J, Wilkie DJ. Knowledge of Palliative Care Among American Adults: 2018 Health Information National Trends Survey. J Pain Symptom Manage. 2019 Jul;58(1):39-47.e3. doi: 10.1016/j.jpainsymman.2019.03.014. Epub 2019 Mar 26. PMID: 30922703.
  4. Trivedi N, Peterson EB, Ellis EM, Ferrer RA, Kent EE, Chou WS. Awareness of Palliative Care among a Nationally Representative Sample of U.S. Adults. J Palliat Med. 2019 Dec;22(12):1578-1582. doi: 10.1089/jpm.2018.0656. Epub 2019 Apr 30. PMID: 31038384; PMCID: PMC6998043.
  5. Undem P, Joynt J, 2019, Help Wanted: Californias' View and Experiences of Serious Illness and End-of-Life Care'.
  6. Sudore RL, Schillinger D, Katen MT, et al. Engaging Diverse English- and Spanish-Speaking Older Adults in Advance Care Planning: The PREPARE Randomized Clinical Trial. JAMA Intern Med. 2018;178(12):1616-1625.
  7. Sudore RL, Boscardin J, Feuz MA, McMahan RD, Katen MT, Barnes DE. Effect of the PREPARE Website vs an Easy-to-Read Advance Directive on Advance Care Planning Documentation and Engagement Among Veterans: A Randomized Clinical Trial. JAMA Intern Med. 2017;177(8):1102-1109.
  8. Freytag J, Street RL, Jr., Barnes DE, et al. Empowering Older Adults to Discuss Advance Care Planning During Clinical Visits: The PREPARE Randomized Trial. J Am Geriatr Soc. 2020;68(6):1210-1217.
  9. Nouri S, Street RL, Jr., Barnes DE, et al. Empowering patients with the PREPARE advance care planning program results in reciprocal clinician communication. J Am Geriatr Soc. 2022;70(2):585-591.
  10. Rennels CF, Barnes DE, Volow A, Shi Y, Li B, Sudore RL. PREPARE for your care and easy-to-read advance directives increase real-time goal concordant care. J Am Geriatr Soc. 2023;71(2):668-670.