UC San Francisco is working with nonprofits that serve seniors and patients with serious medical conditions to raise awareness about palliative care and advance care planning.
The partnerships are the result of a collaboration between the UCSF Division of Palliative Medicine and the San Francisco Palliative Care Work Group (PCWG), which is working to address inequities among communities of color in accessing palliative care and advance care planning.
This initiative follows a San Francisco Bay Area survey, which shows that:
38% of people dying in a hospital had inadequate pain control, 34% had problems with shortness of breath and 67% had inadequate emotional support.
38%
of people dying in a hospital had inadequate pain control.
34%
of people dying in a hospital had problems with shortness of breath.
67%
of people dying in a hospital had inadequate emotional support.
Research also shows that 14% of whites had not disclosed end-of-life preferences before they died. For Chinese people the figure was 30%, and for Black and Hispanic people it was 45%.
Patients with conditions like advanced cancer, heart failure, dementia and Parkinson's disease may benefit from palliative care, which has been shown to improve quality of life for both patients and their caregivers, and lower the cost of care.
Eight clinicians from the UCSF Division of Palliative Medicine, known as ambassadors, are being matched with each community group, based on shared language or culture.
The clinicians will work with PCWG to develop engagement strategies on palliative care and advance care planning, in which patients identify end-of-life preferences and select a health care agent to make decisions on their behalf, should they be unable to make them themselves.
"These higher figures among communities of color reflect the disparities we see across the board in health care," said Steven Pantilat, MD, chief of the UCSF Division of Palliative Medicine. "As equal partners with the community, we want to avoid approaches like, 'Hey, we have this project that we've developed.' Instead, we say, 'Here's an issue we think is important - tell us if it would resonate. What are the messages that would work in the community?'"
Palliative care doesn't always mean end-of-life care
Unlike hospice, palliative care is not restricted to patients who have ceased curative treatments and are expected to survive no longer than six months, Pantilat said, noting that some patients in both hospice and palliative care "graduate" and return to their previous providers because their illness has stabilized, or their cancer is in remission.
"Many patients with serious illness who are approaching the end of life get care they don't want, and that is of no benefit to them," he said. "This is an opportunity to respect the choices that align with their goals. If they want to be at home with their loved ones and focus on treating their pain and shortness of breath, we honor those wishes and make sure they get the care they need. If they choose to enroll in a clinical trial or be admitted to the ICU to treat a serious infection, we'll do everything we can to support them through that."
Executive director of the PCWG Loren Pogir said the collaboration exemplifies a dynamic and mutually beneficial partnership in which UCSF clinicians equip community members with critical information. "In return, community members provide feedback to help UCSF tailor the communication and delivery of these services to better meet their specific needs," she said.
"The PCWG is a community-driven organization with a proven track record of building trusting relationships," Pantilat said. "This partnership extends our decades-long collaboration, and we look forward to continuing it."
Matching those served by Self Help for the Elderly - largely Chinese-speaking seniors - with a Chinese-speaking clinician is critical, said Anni Chung, the organization's president and chief executive officer. "Death and dying are taboo subjects for this population," she said. "But working with the PCWG has enabled us to help overcome this taboo."
Getting the conversation started may be hard, said Pogir, "but we're finding that once people start talking, they are grateful. They say, 'How come we've never discussed this before?' What we might think of as scary is not scary in the right environment when trust has been built."
About UCSF Health: UCSF Health is recognized worldwide for its innovative patient care, reflecting the latest medical knowledge, advanced technologies, and pioneering research. It includes the flagship UCSF Medical Center, which is a top-ranked specialty hospital, as well as UCSF Benioff Children's Hospitals, with campuses in San Francisco and Oakland; Langley Porter Psychiatric Hospital and Clinics; UCSF Benioff Children's Physicians; and the UCSF Faculty Practice. These hospitals serve as the academic medical center of the University of California, San Francisco, which is world-renowned for its graduate-level health sciences education and biomedical research. UCSF Health has affiliations with hospitals and health organizations throughout the Bay Area. Visit http://www.ucsfhealth.org/
