Why Our Work Matters
Why Our Work Matters
In California and across the country, people with a serious illness and those approaching the end of life endure unnecessary suffering, which includes receiving care that does not align with their wishes and values. 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 family . This experience is likely 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.
Fortunately, there are existing solutions to improve care for people with a serious illness including palliative care and advance care planning. Palliative care is a medical specialty tailored for people with serious illnessiii. It provides an additional layer of support alongside curative treatment. Research has shown that palliative care improves patient well-being, overall experience, and satisfaction by alleviating symptoms, enhancing quality of life, and preventing unnecessary or unwanted hospitalizations. Advance care planning (ACP) is a structured process that empowers people to effectively communicate their medical preferences. Engaging in ACP significantly increases the likelihood that healthcare providers, friends, and families will understand and respect patients' preferences. PREPARE for Your Care, the advance care planning tool used by the Palliative Care Work Group in sponsored workshops, has been shown in randomized trials to empower patients and caregivers/surrogate decision-makers to speak up about their and their loved ones' medical wishes decrease health disparities in ACP, and increase real-time goal concordant care.
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 awareness. 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.
In San Francisco, 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 ethnicity.
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 (PCWG) is making a significant contribution to this goal by actively engaging and educating patients and families and helping them to engage in advance care planning and access palliative care.