Community Approach to Advance Care Planning and Palliative Care in San Francisco

If we’re not careful, we’ll look past all that’s in us and in front of us, busily seeking what we already have, earnest with furrowed brow and wild hair. And all the while time is counting down. The eyeglasses we’re looking for are sitting right on top of our sun-spotted heads. Stained teeth, graveled skin and dark skies will do. These things have every bit as much aesthetic potential as anything else. It’s your prerogative to say what turns you on and improves life for you. Just be sure to linger a moment before picking the words.

Being turned on—enlivened—when coupled with a moral sense and aptitude for truthfulness, is one of the kindest things you can do for yourself and everyone around you. It seems more like a responsibility now than mere recreation or an academic pursuit. You glow, even through thickened skin. You make light, especially if you know darkness. You love. Maybe aesthetics offers the activism of our time.

You don’t really have to have an adjective, but if it’s beautiful that you need—I know I still do—remember that it’s you who makes anything so. In the eye of the beholder, yes indeed, and in the fingertips, nose, ear, tongue, and mind too. BJ Miller is an American physician, author and speaker. He is a practicing hospice and palliative medicine physician and is best known for his 2015 TED Talk, "What Really Matters at the End of Life." BJ has been on the teaching faculty at UCSF School of Medicine since 2007. He sees patients and caregivers through his online palliative care service, Mettle Health. His book for approaching the end of life, A Beginner’s Guide to the End, was co-authored with Shoshana Berger and published in 2019. BJ formerly served as Executive Director of San Francisco’s Zen Hospice Project.

Jeffrey Newman, MD, MPH

Since we announced our community-based initiative in the

April 2015 issue of this Journal, our volunteer San Francisco Palliative Care Work Group—supported by the SF Department of Disability and Aging Services—has initiated a variety of activities to promote advanced care planning (ACP) and palliative care (PC), especially in diverse communities in which they are underutilized. These have included presentations, training sessions on ACP, and liaison with provider and community service organizations. The COVID-19 epidemic has heightened the need for ACP and PC, and we applaud the heroic efforts of physicians, nurses, social workers, chaplains, and others who have optimized patient decision making with family/partner participation.

This year we have been funded by the Stupski and Hellman Foundations to initiate tailored assessment and outreach of ACP programs for Chinese, Latinx, and African American Communities. We are currently evaluating the results of these initiatives. Initial observations include: • While older and seriously ill patients usually want to understand prognosis and treatment alternatives and to involve family members and partners in medical decision making—they frequently encounter educational, cultural, and language barriers. • A striking example is the suspicion (especially among many

African Americans—echoing the infamous Tuskegee study of the natural history of syphilis) that palliative care may be used as a replacement for curative care.

Our initial innovative and culturally appropriate community education and family/partner engagement approaches to ACP (and PC) have been well received. We look forward to further development, evaluation, and dissemination. In addition, we seek closer collaboration with medical, spiritual, and community service organizations.

I believe that SFMMS could play an even greater role in promoting ACP and PC in our communities. As patients age and/or develop chronic disease, primary physicians (as well as other clinicians) should routinely assess patient understanding of prognosis & treatment alternatives (which may become increasingly compromised by cognitive impairment and dementia) and readiness to identify alternative decision makers. A single patient visit with family and/or partner may expedite joint decision making. This is consistent with the Osler dictum: “To know our patients is more important than to know their disease.”

Referral to ACP programs in our systems or online e.g. https://prepareforyourcare.org/en/welcome may be sufficient to start the Advance Directive documentation process. For complex serious illness, early PC consultation improves overall treatment and outcomes—without compromising other appropriate medical and surgical interventions.

Jeffrey Newman, MD, MPH specializes in Preventive Medicine. He is Professor at UCSF Institute for Health and Aging and Co-Director of the SF Palliative Care Network.