Every year, the Compassionate Care Leadership Awards seek individuals and organizations who lead the field in palliative care. The open nomination process gives opportunity for anyone and any organization to be recognized. This year, the committee selected Susan Keller as the individual recipient and Benioff Children’s Hospital Oakland’s Pediatric Palliative Care Program as the organization. As the Compassionate Care Innovator, Sandy Chen Stokes, of the Chinese American Coalition for Compassionate Care (CACCC) will be honored. This year’s recipients will be recognized on March 14, 2017 at an award luncheon held in their honor during the 9th Annual Palliative Care Summit.
It would be hard to find a more tireless, long-serving advocate for palliative care, advance care planning and better end-of-life care in her community than Susan Keller. For nearly 40 years, Susan has dedicated herself both personally and professionally to advancing high quality, compassionate care for serious illness as an essential element of community health and health care improvement. For these reasons and many more, the committee selected Susan as the 2017 recipient of our Compassionate Care Leadership Award.
Nominated by the Steering Committee for My Care, My Plan: Speak Up Sonoma County (MCMP), an advance care planning community initiative that she helped to found and on which she still serves, we can see how Susan continues to dedicate her time and vast expertise to her passionate causes.
Beginning in 1978, Susan founded the Community Network for Appropriate Technologies (CNAT), where she serves as the Executive Director and works as a public interest planner, network developer, consumer advocate and educator. In the early 1990s, Susan launched the Community Network Journey Project to develop important programs in response to the lack of palliative care and community-based long-term care, and authored Journey to Life’s End: A Traveler’s Guide. In the past, Susan worked as a UCSF Clinical Instructor teaching advance care planning and palliative care for the Santa Rosa Family Medicine Residency Program from 2010-2015.
Susan has been working in collaboration with the Coalition for Compassionate Care of California since the late 1990s on numerous projects including work with RWJF Rallying Points Program and the Sonoma County POLST Coalition. She also serves as a consumer advocate on the California POLST Task Force and is currently spearheading a project to improve advance care planning and palliative care for people living with serious mental health challenges.
What they say about Susan:
“Since the early 1990s when I met Susan, she has advocated for and educated about the necessity of a palliative care health model and the importance of end-of-life care and conversations. Susan is the consummate community organizer who knows how to network with passion and develop resources to promote health and well-being.”
Nina Arbour, Community Relations & Volunteer Services Manager, Hospice of Petaluma
“I am truly grateful for the opportunities I’ve had to co-labor with this local legend. We’ve come a long way in Sonoma County with the My Care, My Plan campaign. A team player like Susan has been a constructive and tenacious advocate for the important details foundational to this program.”
Dr. Tim Gieseke, Sonoma County Internist
“Susan has a huge heart and deeply cares for all those dealing with advanced illness and death. Through her creativity, policy work, and close community relationships she has made a difference in the lives of patients and their friends and families.”
Rita Scardaci, Retired Director, Sonoma County Department of Health Services
Benioff Children’s Hospital Oakland Pediatric Palliative Care Program
When it comes to pediatric palliative care, one program stands out as the standard-bearer and trailblazer. Formally established in 2011, the Pediatric Palliative Care (PPC) Program of UCSF Benioff Children’s Hospital Oakland (Children’s) continues to lead the field.
Building their program specifically to decrease fragmentation and increase cooperation among the patient’s family and medical team, the PPC Program team works diligently to create partnerships that support a patient in multiple settings, including primary care, specialty clinics, the hospital and at home. This is all done with respect to the child, his or her family, and their collective wishes and needs.
The PPC Program’s mission is to provide expert pain and symptom management, psycho-social and spiritual support, assistance with advance care planning and access to community resources. Using a specialized interdisciplinary team of a physician, nurse and social worker, the program provides this extra layer of support for the child, family and the treating teams. This is done using telephone support, as well as in-person meetings. The team works to facilitate continuity of care among the hospital and the community partners, to best ensure the comfort of the child and family.
At the outset of the program, much education and groundwork had to be done to prepare community organizations and providers to care for child patients. As such, education and training for colleagues across all disciplines and the community was, and continues to be, a large part of the work of the PPC Program. From their End-of-Life Nursing Education Curriculum for Pediatric Palliative Care Course (ELNEC-PPC) to organizing two conferences with national renown, the program continues to lead the conversation on pediatric palliative care. Today the palliative care team has an average census of 18-20 inpatients and close to 300 outpatients all at different stages of their journey. Patients are increasingly being referred earlier in their disease trajectory, allowing for stronger relationship building, the ability to help families identify goals of care and assistance with traversing the complicated health care system–all to provide the best possible care for every child and family.
What they say about the Pediatric Palliative Care Program:
Sandy Chen Stokes, RN, PHN, MSN
Thanks to Sandy Chen Stokes, Chinese Americans in California are able to face the end of life with dignity, respect and culturally congruent care they may not otherwise have. For more than 11 years, Sandy has dedicated her time and love to building the Chinese American Coalition for Compassionate Care (CACCC – the only network in the U.S. devoted to addressing the end-of-life concerns of the Chinese-American Community). A long-time advocate for advance care planning and compassionate end-of-life care, Sandy provides workshops and seminars nationwide for health providers (physicians, nurses, social workers, chaplains and medical interpreters), hospice and palliative care volunteers, and for the Chinese community. For this reason, she is the recipient of the 2017 Compassionate Care Innovator Award.
Sandy founded CACCC in 2005, motivated to help Chinese Americans to talk about and prepare for death, which is considered bad luck for most Chinese. Since then, the organization has continued to grow and serve thousands of Chinese Americans. CACCC’s workshops and seminars focus on Chinese American end-of-life issues, including advance care planning, spiritual care at the end of life, cultural beliefs and practices regarding end of life, and the role of medical interpreters in hospice and palliative care. CACCC now has more than 1,300 individual members and 80 organizational members working to improve end-of-life care services and resources for Chinese Americans. From developing and translating numerous end-of-life resources like the Heart to Heart® cards and Chinese POLST forms, to recruiting and training an army of hospice and palliative care volunteers, to giving hundreds of trainings to educate healthcare professionals who serve Chinese Americans, Sandy’s efforts, and those of the CACCC under her direction, have impacted many lives across the state.
Sandy has focused on end-of-life care, elder care and mental health issues in the Chinese-American community for much of her career. In 2008, Sandy received the American Cancer Society’s Lane Adams Award for her work with the CACCC. Three years later, she received the 2011 AARP Inspire Award. She sits on the Advisory Board for the Chinese Health Initiative at El Camino Hospital in Mountain View and the Diversity Advisory Council for the National Hospice and Palliative Care Organization.
What they say about Sandy:
“I truly admire Sandy’s courage, dedication and leadership to establish and develop CACCC. I am very confident that Sandy Chen Stokes is the most deserving candidate for this award.”
Shirley Pan, Executive Director, CACCC
“Sandy’s unending energy is apparent to anybody who has met her. The list of accomplishments her group has received is evidence of her energy and enthusiasm. CACCC has established itself as the national leader for advocacy for end of life care for Chinese Americans. On the basis of their reputation, CACCC has been invited to support those efforts even here on the East Coast, with activities now in New York.
“Sandy has the unique combination of energy, enthusiasm, leadership skills, and humility which makes her a joy and honor to work with her. I fully endorse her nomination.”
Angelo E. Volandes, MD, MPH, Assistant Professor in Medicine, Harvard Medical School