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This blog post is part of a series designed to offer a deep dive into the Coalition for Compassionate Care of California’s (CCCC) work in 2020 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.

Addressing the Needs of Our Most Vulnerable Communities

CCCC has a long history of partnering with California’s nursing homes to support quality serious illness care for their residents. In the early days of the COVID-19 pandemic, it became immediately clear to CCCC that residents and staff at nursing homes were among the most vulnerable in relation to the disease and in need of support. Specifically, we knew it would be important that nursing home residents be given access to the tools and information needed to have robust conversations with their physicians and loved ones regarding their preferences for care in the face of serious illness, including COVID-19. Similarly, the staff at these facilities were critically in need of resources and education to help them engage their residents in these conversations about understanding and documenting care preferences. Given CCCC’s experience, expertise, and connections in the nursing home industry, we knew it was important that we act quickly to address these needs.

Thanks to grant support from the California Health Care Foundation, CCCC was able to complete a rapid-cycle 10-week project to provide education and resources to nursing homes regarding advance care planning (ACP), beginning in April 2020, with four primary objectives:

  • Engage nursing home and ACP stakeholders in assessing the challenges created by COVID-19 for nursing home residents and options for development, dissemination, and promotion of supportive resources, materials, and education;
  • Collect, curate, package, and disseminate materials that articulate the importance of ACP discussions and documentation for nursing home residents, the critical need for ACP during COVID-19;
  • Produce a webinar to support dissemination of information and best practices; and
  • Produce short videos for healthcare professionals around using CCCC’s CPR and Ventilator Decision Aids during the COVID-19 crisis.

In addition to our original objectives, we also were able to go above and beyond with additional accomplishments, including:

  • Working with key stakeholders to develop language of an All Facility Letter (AFL) to provide guidance to nursing homes regarding ACP and POLST during COVID;
  • Through CCCC’s advocacy, the California Department of Public Health (CDPH) issued the AFL to all nursing homes in the state;
  • Serving as experts on the AFL during a webinar and Q&A session hosted by CDPH and the Health Services Advisory Group to inform nursing homes about the AFL;
  • Developing and presenting a second CCCC webinar on nursing home ACP best practices; and
  • Creating articles on the importance of ACP in long-term care published in the newsletter and magazine of California Association of Health Facilities and LeadingAge California.

Bringing in Stakeholder Voices

CCCC is well-known as a statewide convener. Throughout our 20-year history, we have developed the relationships and connections needed to bring together a wide array of stakeholders during times of need, such as the COVID-19 pandemic. During this 10-week project, we quickly brought together a diverse group of key long-term care stakeholders in order to create an advisory group. The final composition of the group included key influencers and thought leaders from around the state, including representatives from state government, academia, and numerous organizations serving California’s nursing homes.

The advisory group met at regularly intervals during the project to:

  • Offer input and review project-related tools and resources;
    • Provide advice on project-related planning, priorities, and best practices for outreach to nursing homes on ACP educational materials and resources; and
    • Provide critical perspective from the nursing home provider point of view on staff’s ability and bandwidth to engage in recommended ACP activities.

Creating Key Resources and Getting the Word Out

CCCC created what became a nationally-recognized online toolbox of ACP information and resources called COVID Conversations, which was shared with key contacts at nursing homes to assist staff and patients. The toolbox provides consumer resources, educational offerings, conversation tools, information on advance directives and POLST, government guidance, shared resources, and an “in the news” section.  It was recognized by the Centers for Medicare and Medicaid Services as a best practice in the Toolkit on State Actions to Mitigate COVID-19 Prevalence in Nursing Homes, and by the Commonwealth Fund in a report about palliative care during the pandemic. 

CCCC also created two webinars on best practices around ACP in nursing homes:

  • A May 14 webinar on CCCC Decision Aids: Ventilators, CPR, Transfers, and Comfort Care was presented by Jessica Nutik Zitter, MD, MPH, author and practicing physician; and Karl Steinberg, MD, CMD, HMDC, Medical Director for Hospice by the Sea.
  • A May 27 webinar, COVID Symptom Management in Skilled Nursing, was presented by Takeshi Uemura, MD, Assistant Professor, Department of Geriatric Medicine, Division of Palliative Medicine, University of Hawaii School of Medicine, and a Founder of VitalTalk Japan; and Eric Chyn, MD, Geriatrician and Internal Medicine Physician, Community Health of Central Washington.

Together, more than 500 people registered for these webinars, and feedback was extremely positive. Comments about how the information they gained would impact their practice included:

  • “[I feel] more informed when considering end-of-life and or emergency decisions”;
  • “This information will help me advise nursing home partners”; and
  • “[I have a] better understanding of comfort treatments I can provide for my palliative nursing home patients.”

Additional educational efforts include the production of a consumer-focused video to support nursing home residents and their families’ understanding of ventilator use so they could make more  informed decisions regarding these key treatment options. The videos were designed to be used in tandem with digital or printed versions of CCCC’s highly respected Ventilator Decision Aid. A similar video on CPR is currently in post-production, to be available soon.

In addition to CCCC’s own robust dissemination work – including a special e-newsletter specific to the COVID crisis – the advisory group members were also key in expanding the reach of our efforts as they actively shared project resources, amplified messaging within their own networks, and helped disseminate information and materials. 

Making a Difference in a Critical Time

CCCC’s position as a statewide leader in ACP advocacy meant that we knew which stakeholders to engage and how to successfully create a robust plan of action to attend to some of the most at-risk communities during the COVID-19 crisis: those living or working in nursing homes. Our nursing home efforts continue beyond this rapid cycle project, and we work to address the needs of nursing home staff and residents and support quality end-of-life care.

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