Universal Palliative Care—The MERI Center's Vision for Education in Palliative Care

UNIVERSAL PALLIATIVE CARE—

The MERI Center’s Vision for Education in Palliative Care

Redwing Keyssar, RN; Gayle Kojimoto, BA; Judy Long, BCC and Michael W. Rabow, MD

Palliative care offered by interdisciplinary teams of specialists (trained in scrupulous symptom management, advance

care planning, and communication) has demonstrated benefits to patients, families, and health care systems, across both the inpatient and outpatient settings. Evidence abounds that such Specialty Palliative Care (SPC) helps people facing serious illness feel better and can align their care with their preferences and values. SPC provided concurrently with expert oncologic care has even led, in some settings, not just to an improvement in quality of life but to a prolongation of length of life as well.1 However, with just a few hundred palliative care physician fellows graduating each year (and with the retirement of current palliative care specialists)2, there will never be enough trained palliative care clinicians of any discipline to care for the millions of people in need in our country alone.

In the setting of profound limitations in the capacity of SPC— specialist work force limitations in California3 and nationally— many have looked to a vision of Primary Palliative Care (PPC) whereby all providers caring for patients with serious illness gain competencies in providing basic symptom management and serious illness communication skills.4 If basic palliative care can be provided by front-line oncologists, cardiologists, pulmonologist, neurologists, primary care providers, and the nurses working in those fields, perhaps similar benefits can accrue as seen in SPC.

Building good palliative care practices into the routines of all health care workflows, processes, and systems undoubtedly improves care. However, there is some suggestion in the emerging literature on PPC that palliative care generalists may not offer the same benefits as palliative care specialists. The things that palliative care specialists do (and the associated outcomes) may not be replicated by generalists. In a recent study by Yael Schenker, oncology nurses well-trained in PPC were unable to achieve benefits that their SPC colleagues have demonstrated.5 While we and many others remain hopeful that our health care system can figure out a way to train and support generalists to provide effective palliative care to the vast majority of patients with serious illness, some are beginning to focus elsewhere.

At UCSF, the Symptom Management Service (SMS) provides SPC in the cancer center (the Helen Diller Family Comprehensive Cancer Center). One of the largest SPC outpatient programs in a cancer center nationally, the SMS still only is able to serve about 15% of the cancer center’s patients. Clearly, many of the other 85% of patients would benefit from the outcomes achieved by SMS SPC service.6,-8 However, it is difficult to engage busy oncologists in learning new palliative care skills. Everyone is so, so busy. Reimbursement for cancer care traditionally is linked to the provision of cancer treatments. And while value-based payment models might eventually change this dynamic, for now, some are beginning to turn to a third model of care—"Universal Palliative Care.”

Universal Palliative Care (UPC) — or what also might be described as Palliative Care for the People — is an old concept of arming patients themselves, and their families and communities, with the skills necessary to address as many of their care needs as possible. People (and those who love them) might be able to take care of themselves for the vast majority of their palliative care needs (and certainly have a powerful motivation to do so). There is a popular book, Donde No Hay Doctor [Where There is No Doctor], that is considered by the World Health Organization to be the most widely-used health care manual in the world. This book is written with the belief that “Health care is not only everyone’s right, but everyone’s responsibility”9 and is intended to empower people and communities to care for themselves for a large portion of their own needs. It is possible that self-, family-, and community-care is what is needed in palliative care. Perhaps, the greatest need is for all people to have some basic understanding and education related to caring for each other when we are ill, supporting people with serious illness as well as family caregivers, understanding the inequities of our healthcare system and how to navigate the complexity of our healthcare systems, and how to deal with loss and grief.

The MERI Center for Education in Palliative Care at UCSF/Mt Zion was created in 2019 to promote PPC Education on the UCSF/ Mount Zion campus.10 However, engaging busy clinicians in such education is challenging. The task of educating clinicians in PPC became all the more daunting during the COVID-19 pandemic, given the stressors on the healthcare system in general and on individuals involved in healthcare in particular. Stretched thin by demands for extra hours, new learning environments, and constant healthcare crises and grief all over the world,11 the idea of having “extra time” to learn a new skill or philosophy of care has not been on anyone’s schedule. In response to this, MERI has expanded our PPC efforts in supporting the resiliency of clinicians and supporting the UCSF community in healing from grief.

MERI offers resiliency sessions for clinical teams at UCSF, a weekly poetic medicine session called Wounded Healers, that encourages all levels of healthcare workers to express themselves creatively, and a bi-annual online Day of Remembering for UCSF clinicians and patients to honor those who have died in our care. In 2020/2021, over 475 people attended these sessions.

As important as SPC and PRC have become in the global pandemic and associated healthcare crisis, MERI’s impact has grown fastest and most reliably in serving people and their loved ones directly (that is, in providing UPC rather than PPC education).

Since the pandemic lessened our access and ability to work with clinicians directly, the MERI Center has focused much of our attention on addressing the public or community needs for support and education related to palliative care. At first it was difficult to imagine deep enough levels of support for people in Zoom formats. However, we have learned through our experience during the pandemic that the ease of access for people throughout the Bay Area, the country, and indeed internationally, has created communities of people who are truly creating a world wide web of support for each other and within their own communities. Between July 2020 and June 2021, these online sessions reached 2,780 people and include: • What Matters Most? Advance Care Planning Workshop • Food for Thought: A Poetry Cafe • Last Acts of Kindness; Care & Compassion at the End of Life • Loss, Losing, & Loosening: Exploring Grief and Healing

Through Poem-Making • Poetic Medicine for the "Wounded Healer" • Resiliency for People with Neurologic Illness • Resiliency for People with Serious Illness • Serious Illness Support Group: Conversation about

Living and Dying • Sustainable Caregiving for Care Partners of People with Neurologic Illness • Sustainable Caregiving for Care Partners of People with Serious Illness

Details about each of these offerings can be found on the

MERI Center website at https://MERI.UCSF.edu

Ultimately, the ideal palliative care network for patients, loved ones, clinicians, and health systems alike is a thoughtful, integrated balance of Specialty, Primary, and Universal Palliative Care. With all the resources, expertise, history of activism, and spirit of community, the Bay Area is well-suited to excel and lead on all fronts.

Judy Long, BCC is Associate Director of Wellbeing & Resilience, Division of Palliative Medicine/ UCSF. She is the Chaplain/educator for the MERI Center and the UCSF Symptom Management Service; Redwing Keyssar, RN is the Director of Patient and Caregiver Education at the MERI Center. She is a Palliative Care nurse and educator and an author/poet Gayle Kojimoto, BA has worked in Palliative Care at UCSF in many roles and is currently the Program Manager for the MERI Center; Michael W. Rabow, MD is the Director of the MERI Center as well as the Director of the UCSF Symptom Management Service; Palliative Care, Helen Diller Family Comprehensive Cancer Center; Associate Chief for Education & Mentoring, Division of Palliative Medicine; Helen Diller Family Chair in Palliative Care and Professor of Clinical Medicine and Urology, UCSF.

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