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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.

Responding to Urgent Needs:
The COVID Conversations Initiative

In early March 2020, as the gravity of the COVID-19 pandemic began to take shape, CCCC quickly recognized that the public health crisis heightened the urgency and clarified the importance of advance care planning and palliative care, while simultaneously creating roadblocks due to social distancing requirements. It was also clear that CCCC is uniquely positioned to respond quickly and effectively to such a crisis because of its well-established experience, educational materials, working relationships, and communication networks.

CCCC immediately developed and launched COVID Conversations, a wide-ranging, multi-pronged effort to raise awareness and provide tools and resources to support patients and health care providers in having important conversations around serious illness and goals of care.  CCCC’s COVID Conversations initiative includes:

  • A robust toolbox on the CCCC website of free, easily-accessible resources and information to support quality conversations between patients and providers around COVID-19, treatment options, and palliative care;
  • Five free COVID-specific educational webinars;
  • Digital versions our of respected healthcare Decision Aids on ventilation, CPR, tube feeding, and artificial hydration, all available for download free of charge – as well as a new video to support conversations about ventilator use.
  • Extensive engagement work with state public policymakers and thought leaders to develop and implement public policy initiatives to clarify regulations and overcome challenges related to advance care planning during a public health emergency ; and
  • Media outreach and coordinated information sharing with partner organizations to spread the word about the importance of advance care planning and person-centered care during the pandemic.

The COVID Conversations Toolbox

In order to make important information related to the COVID crisis as easily accessible as possible, CCCC took all the relevant information on our website, aggregated additional news and information from external sources, and put it all in one easy-to-navigate Toolbox.  Here, consumers, caregivers, and healthcare professionals could quickly find the resources they might need during the crisis. Everything from important conversation tools and scripts, to advance directives and the California POLST form, as well as a curated list of pertinent news articles, and guidance from government agencies are all here on one page.

The main Toolbox page received more than 5,000 page views over the first few months, as well as national recognition by the Centers for Medicare and Medicaid Services as a best practice in their 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.

As part of our Conversation Tools, we included our widely-sought-after health care Decision Aids on ventilator use, CPR, artificial hydration, and tube feeding. We also created and uploaded a companion video to help providers explain ventilator use during COVID-19.  CCCC offered free digital downloads from our website during the first seven months of the pandemic.

COVID-Specific Educational Webinars

CCCC also leapt into action to partner with other respected subject matter experts to create a series of five free COVID-specific educational webinars — and made them available free of cost. This COVID Conversations series of webinars all remain available for free on-demand viewing on CCCC’s website:

  • Medical Decision-making in the Face of Serious Illness, presented by Judy Thomas, JD,  and Karl Steinberg, MD, CMD, HDMC, provides an overview of advance care planning concepts, including advance directives, POLST, and quality conversations.
  • Difficult Conversations in the Time of COVID-19, presented by Robert Arnold, MD, addresses how to talk to patients about advance care planning in the era of COVID-19, including addressing goals of care and attending to the emotions associated with the pandemic.   
  • Team Approach to Assisting Patients with Advance Care Planning, presented by Seiko Izumi, PhD, RN, FPCN, addresses how the healthcare team can work together to assist patients and their families with advance care planning and goal-concordant care.
  • CCCC Decision Aids, Ventilators, CPR, Transfers, and Comfort Care, presented by Jessica Nutik Zitter, MD, MPH, and Karl Steinberg, MD, CMD, HMDC, covers best practices for helping patients better understand the potential benefits, risks, and side effects of ventilator use and CPR amid COVID-19, and how CCCC’s Decision Aids can be used to support conversations about these often misunderstood treatments.
  • COVID Symptom Management in Skilled Nursing, presented by Takeshi Uemura, MD, and Eric Chyn, MD, provides an overview of symptom management of COVID-19 patients in the nursing facility setting.

More than 1,000 people attended the five webinars, which were well-received. Attendees provided very positive feedback, such as:

  • “This information was very helpful — both for covering issues that have come up in light of COVID-19, AND for reminding us of answers to tricky questions that occasionally arise.”
  • “As an ER nurse I feel I was given good opening conversation starters for patients and families for ACP discussions.”
  • “It energized me to take next steps.”
  • “[I feel] empowered with knowledge.”

Convening Stakeholders to Enact Change

Drawing on its well-established relationships, its policy expertise, and its reputation as a leader and convener, CCCC engaged in a public policy effort to address pandemic-related barriers to advance care planning and ensure patients and providers are supported in having thoughtful conversations about goals of care so that patients are receiving person-centered care. These efforts included:

  • Executive Order
    CCCC, in collaboration with UCSF/UC Hastings Law Consortium and others, sought an Executive Order from the Governor clarifying current laws regarding advance care planning and electronic or digital signatures. Our goal was to identify and address existing provisions in laws related to advance care planning that may create burdensome logistical barriers for patients or providers when advance care planning is completed remotely, such as requirements to obtain signatures from witnesses or notaries. The Alzheimer’s Association; the California Association of Long-Term Care Medicine (CALTCM); the California Hospice and Palliative Care Association; LeadingAge California; and Jones, Lester, Schuck, Becker & Dehesa, LLP, joined in support of the effort. You can read more about this work here.
  • All Facilities Letter
    CCCC sought and obtained an All Facilities Letter (AFL 20-73) from the California Department of Public Health (CDPH) to nursing homes which provides recommendations and guidance on advance care planning during COVID-19.  CCCC also presented information on AFL 20-73 to nursing home providers on a webinar and follow-up phone call co-hosted by CDPH and Health Services Advisory Group. The AFL was a key product of a rapid-cycle grant funded by the California Health Care Foundation under which CCCC led a group of stakeholders in an effort to improve advance care planning in the nursing home setting. You can read more about this work here.  
  • Physicians and Local Leaders
    CCCC met weekly via conference call with our POLST/ACP Physician Leadership Council to stay abreast of the needs of our community and brainstorm response to specific needs related to POLST, advance care planning, and the pandemic.

    In collaboration with our local community leaders, CCCC was able to initiate dialogue about advance care planning education and outreach to help everyone working in serious illness care to rise to the challenges presented by COVID.
  • Verbal Consent for POLST
    Overcoming barriers to advance care planning caused by sheltering in place and the ban on visitors at hospitals and nursing homes was another major issue CCCC addressed as part of our COVID Conversations campaign. In addition to seeking an Executive Order from the Governor (see above), CCCC created and published guidance on how and when to obtain verbal consent with the California POLST and shared Guidance for Health Care Professionals to Identify Appropriate Patients for POLST created by National POLST.  

Media Outreach and Coordinated Information Sharing

To reach a broader audience and share information about the importance of advance care planning during the COVID-19 crisis, CCCC reached out to digital and print media statewide and worked in partnership with several key stakeholders.

We created or co-created a number of communications related to the COVID crisis, including:

  • A timely and urgent April 1 blog post on CCCC’s website that outlined in detail actions that could be taken right away;
  • An OpEd, co-authored by CCCC’s CEO, Judy Thomas, JD; Sheila Singh Dobbins, RN; and Elena Lopez-Gusman, executive director of the American College of Emergency Physicians’ California Chapter, which was shared with newspapers statewide and published in the Modesto Bee on May 14;
  • Special bi-weekly COVID Conversation email newsletters in April and May;
  • Articles written by CCCC that we shared with California’s two primary trade associations for long-term care – California Association of Health Facilities and LeadingAge California – with newsletter articles on the importance of advance care planning, which they shared with their members by including in their newsletter and magazine; and
  • Judy Thomas provided an interview to the Health Hats blog on COVID and End of Life Choices.

CCCC also coordinated with our partners throughout the state on additional educational offerings:

  • In collaboration with the CSU Shiley Institute for Palliative Care to help them offer free access to five applicable online courses: “Billing for ACP Conversations”; “Effective ACP Fundamentals”; “Facilitating an ACP Conversation”; “Integrating ACP into Your Medical Practice”; and “Working with POLST.”  During the period of this project, 623 individuals availed themselves of these free educational offerings.
  • Judy Thomas provided two presentations at the request of the Health Services Advisory Group to offer information on end-of-life challenges that are occurring as a result of COVID: one to meetings of the Los Angeles Dignity Post-Acute Care in April, and another to Kern County Post-Acute Care in May.
  • And CCCC board member Karl Steinberg, MD, CMD, HDMC, participated in the CALTCM Weekly Rounds webinar series with a presentation titled “Advance Care Planning in the PALTC: Even More Vital Now.”

Urgent Action, Making an Impact

CCCC’s ability to rise to the challenges presented by COVID-19 is grounded in our 20+ years of experience as a leader in this field and a convener of like-minded professionals. Our expertise with coalition building allows us to quickly and effectively bring people and resources together to coalesce around issues of shared importance.

As the pandemic continues to endanger lives and impact our world, CCCC is committed to working with our coalition members to respond to the crisis and support providers and patients in partnering to ensure everyone receives person-centered care.

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