Posted on: January 22, 2021
Written by: CCCC administrator
This blog post is part of a series designed to offer a deep dive into the Coalition for Compassionate Care of California’s recent work and the direct impact this work is having in improving care for people who are seriously ill, as well as supporting and growing the movement to transform serious illness care. A new post on a different area of CCCC’s impact will be published every other week. You can receive these updates in your email when you sign up for our eNewsletter. This work is only possible due to the financial support of our funders and donors. Please consider making a gift to CCCC today.
Fostering the Advance Care Planning Ecosystem to Support Person-Centered Care
Advance care planning (ACP) is making decisions about the care you want to receive if you become seriously ill or have a medical crisis. But it is more than just filling out a form or marking items off a checklist. ACP is a process which involves an ongoing series of conversations around exploring your personal values, priorities, and wishes for care, and understanding life-sustaining treatment options in the context of your health. It includes sharing your thoughts and wishes with medical providers and loved ones, and revisiting and revizing your plans as needed throughout your adult life. It should also include identifying someone you trust to act as your voice for making medical decisions when you can’t speak for yourself. The Coalition for Compassionate Care of California (CCCC) wants the ACP process – and conversations about serious illness – to be a normal part of everyday healthcare and everday life. To achieve this vision, CCCC is working to establish three core competencies in the ACP ecosystem:
- Competent communities,
- Competent professionals, and
- Competent systems.
Our efforts involve working with individual healthcare providers, local communities, and healthcare organizations across the state and nation to build and strengthen the ACP ecosystem and foster a quality experience for both patients and healthcare teams.
Competent Communities: Bringing Advance Care Planning Advocates Together
Each community has diverse needs and opportunities, making community leadership and support for ACP essential. To support developing ACP-competent communities, CCCC works with community-based ACP/POLST coalitions in 29 communities throughout the state, and through monthly support calls, we foster communication and provide resources and guidance for shared learning opportunities.
Partnership Healthplan of California (PHC) recognizes that local coalitions can be an invaluable partner in the grassroots level work of increasing public awareness and engagement around ACP. But not every community has an active ACP coalition. That’s why PHC tapped into CCCC’s years of experience with coalition building and hired us to help them develop ACP coalitions in some of PHC’s local service areas. With PHC’s financial support, CCCC worked to identify local ACP leaders in PHC service areas and guided them step-by-step in establishing or reinvigorating local ACP coalitions. During the 18-month project, the leaders of the fledgling coalitions received financial, leadership, educational, mentorship, and logistical support from PHC and CCCC. The local volunteer leaders built their local coalition membership, developed web sites and communication plans, and launched community outreach and engagement efforts. Four coalitions were developed under the project:
- Humboldt Advance Care Planning (HUM ACP)
- My Life. My Way. Lake County Coalition for Advance Care Planning
- Siskiyou ACP Coalition, “Let’s Talk”
- Yolo Coalition to Honor Choices (YCHC)
These coalitions now have a solid foundation on which they can build and grow, and PHC has additional community-based partners in their ACP outreach and engagement efforts.
Read more about this project HERE.
Competent Professionals: Offering Trainings that Move the Advance Care Conversation Forward
Healthcare professionals need quality education and skill-building on best practices to help them be more confident in engaging their patients in ACP discussions. That’s why healthcare organizations throughout the state – including UCLA Health, PHC, Family Health Care Centers of San Diego, Adventist Health, and others – have turned to CCCC to provide their staff with this training through our well-respected ACP curriculum, “Let’s Talk: Promoting and Engaging in Advance Care Planning.” The “Let’s Talk” curriculum is appropriate for providers throughout the full continuum of care. It includes a robust explanation of the purpose and importance of ACP, conversation strategies, and cultural sensitivity training. Role playing is utilized to help attendees become more comfortable with initiating conversations with patients regarding what matters most to them, their preferences for care, and selecting a surrogate for making healthcare decisions should they lose their ability to speak for themselves. The eight-hour curriculum is an expeditious way for a healthcare organization to quickly get their staff engaged and informed about ACP, so that they can in turn serve their patients with sensitivity and a robust knowledge base.
Building off our long-standing work with the developmental disabilities community and work we had done collaboratively with this community to produce our “Thinking Ahead” advance directive workbook, the “Let’s Talk” curriculum was recently modified and presented to Valley Mountain Regional Center (VMRC) in the San Joaquin Valley, which supports individuals with development disabilities. CCCC is continuing to build out this specialized training focused on people with developmental disabilities. You can read more about CCCC’s work with the developmental disabilities community HERE.
Competent Systems: Supporting Communities and Professionals at the Systems Level
Change also needs to happen at the system level in healthcare so that ACP fits seamlessly into the standard workflow. One positive example is UCLA Health, which has undertaken a system-wide Advance Care Planning Initiative (ACPI) aimed at creating and fostering a culture, skills, and infrastructure within the organization that supports effective and compassionate communication, reliable documentation of preferences and goals, and high-quality serious illness care. As part of this work, UCLA hired CCCC to help them create an ACP curriculum for UCLA’s staff using CCCC’s “Let’s Talk” curriculum as a foundation. UCLA is using the curriculum to provide:
- Training for care coordinators to use with patients in primary care clinics to introduce consideration of goals of care and lay the foundation for conversation with a physician;
- Training for physicians on how to conduct ACP conversations; and
- Deep dive training for specialized staff, such as a palliative care nurse practitioner embedded in UCLA’s Oncology clinic and an ACP social worker embedded in the Cardiomyopathy clinic.
CCCC is also working with UCLA, with the participation of UCSF and UC Irvine, on a multi-pronged, multi-year research study funded by the Patient-Centered Outcomes Research Institute (PCORI). The study is examining the degree of proactive support required from the healthcare system to increase patient engagement in ACP. Interventions range from the introduction of an advance directive, an advance directive plus engagement with the PREPARE for your Care website, or those two interventions plus the addition of a dedicated care coordinator to assist patients and caregivers with their ACP. CCCC is working with the study team at all three institutions as well as with a Community Advisory Committee, comprised of a small group of patients, to ensure the patient voice is included in the study.
Making Long-term Impact to Support Patients and Healthcare Professionals
ACP is an ongoing process that supports adults at any age or stage of health in understanding and sharing their personal values, goals, and preferences regarding future medical care. It helps ensure that the care delivered to patients is in accordance with the care they desire, mitigates the burden of unwanted healthcare interventions, and provides peace of mind for providers, patients, and loved ones. CCCC’s goal is to make the ACP process a part of everyday life so that all adults have the information, support, and time they need to think about and make decisions that are right for them. We are dedicated to driving this important work forward, and we are excited to develop new and creative opportunities to work collaboratively with local coalitions, healthcare organizations, and individual providers to strengthen and support the ACP ecosystem and achieve our goal.