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Advancing Care through Innovation, Observation and Collaboration.

State Coalition Field Reports: Spotlight on Community-Level Change

Grassroots level efforts to improve the lives of people with serious illness are far-reaching and essential. C-TAC has supported the development of several statewide coalitions across the country – collectives of groups from a variety of backgrounds who are committed to supporting the sickest and most vulnerable among us.

Every other month, we will be checking in with our members and partners to provide an update on these coalitions. These Field Reports will highlight their efforts to drive community-level change. Stay tuned to learn more about the work of these coalitions and how you can get involved!

California

March and April continue to be extremely busy for the Coalition for Compassionate Care of California (CCCC) as they work on critical policy work and plan their 13th Annual Palliative Care Summit.

For the first time in its 13-year history, CCCC will present the Palliative Care Summit in partnership with the Arizona Hospital and Healthcare Association and Hawaii’s Kōkua Mau, a Movement to Improve Care.

The two-day Summit, presented virtually on June 22 & 23, will feature world-class speakers, breakouts, discussion sessions, an art and music reception, and a poster session. Attendees will get the latest information on the state of serious illness care from thought leaders, connect with colleagues and friends in breakouts and group discussions, and have the opportunity to rejuvenate the mind and spirit with a variety of activities. More information about the Summit is available here!

On the policy front, AB 1234 – the POLST Registry bill that CCCC is sponsoring – will likely be held over until the 2022 legislative session. This provides an opportunity for CCCC to continue building a strong network of support for the legislation among key stakeholders and with legislative leaders. CCCC is also continuing to work with the bill’s author, Assemblymember Dr. Joaquin Arambula, to request state budget allocations in support of the POLST Ecosystem and Statewide Registry. CCCC remains hopeful and excited about the potential for this legislation to help those living with serious illness receive goal-concordant care that is aligned with their wishes.

Hawaii

Kōkua Mau is a statewide coalition of committed organizations and individuals working to improve care for those with serious illness by focusing on widespread Advance Care Planning, high quality palliative care and timely hospice referrals.

Hawaii’s Medicaid program is committed to the creation of a palliative care benefit that would have the approval of CMS. They have received a grant from the Stupski Foundation in San Francisco and are working with Torrie Fields, CEO and founder of Votive Health, to determine eligibility, services, quality measures, and payment. Considerations of equity and access are essential and embedded in the team’s process. The first public presentation of the draft benefit will be held in late June and the process of creating the benefit will unfold over the next 3 years.

Massachusetts

More than one hundred Massachusetts-based organizations have come together to form the Massachusetts Coalition for Serious Illness Care. The coalition’s mission is to ensure that health care for everyone in Massachusetts is in accordance with their goals, values and preferences at all stages of life and in all steps of their care.

The Massachusetts Association of Colleges of Nursing announced their unanimous decision to endorse the CARES competencies (Competencies And Recommendations for Educating Undergraduate Nursing Students), a set of 17 key competencies necessary for nurses to provide high-quality care to patients and families facing serious illness, along with the G-CARES competencies for graduate level nursing students. Read more about this exciting news here!

The coalition is excited to announce that Massachusetts is building a state electronic registry to allow clinicians timely and trusted access to the medical forms that document patients’ preferences for care near the end of life. The registry will include forms called physician orders for life-sustaining treatment, or POLST. Read more about the new registry here!

New Jersey

The Goals of Care Coalition of New Jersey (GOCCNJ) shares information about their work to ensure that chaplains and clergy in NJ have the information, resources, training, and tools they need to promote high-quality, person-centered advance care planning, palliative care, and end-of-life care services.

With Coalition partners Jewish Sacred Aging, the College of Pastoral Supervision and Psychotherapy (CPSP-NJ), and members of the GOCCNJ’s Faith-Based Collaborative, GOCCNJ developed Clarifying Goals of Care: The Spiritual Care Providers Role in Advance Care Planning, an initiative to educate chaplains, community-based clergy, and seminary students and empower them to facilitate conversations about goals of care, and the medical treatments they may or may not want. The initiative presents a model of spiritual care that includes assessing the patient’s spiritual state, potential distress, goals and values, family dynamics, ethical concerns, and possible organizational influences. Read more about the initiative here

North Carolina

The North Carolina Serious Illness Coalition was established in February 2020 and is the evolution of the work done in 2019-2020 by the North Carolina Institute of Medicine (NCIOM) Task Force on Serious Illness Care. The NCSI Coalition was initially created to advance the recommendations made in the NCIOM Task Force’s final report.

The mission of the NCSI Coalition is to engage a broad range of stakeholders and their perspectives, including providers, consumers, policy advocates, industries, and others, to accelerate the solutions needed to achieve the desired vision for serious illness care throughout the state. It is organized through four working groups: Advance Care Planning, Caregiving and Patient Engagement, Clinical Practice, and Communication, Education, and Advocacy. The Coalition has quickly developed into a major force throughout NC with over 150 members and representing a variety of serious illness perspectives across 80+ organizations.

The NCSI Coalition recently celebrated its One-Year Anniversary by engaging in a collective strategic planning session. This helped to ensure their work is continuously focused on promoting and supporting a culture of care that prioritizes person-centered quality of life, access, and equity across the age spectrum for anyone with serious illness, their families, their caregivers, and their communities.

Ohio

The Ohio State Coalition to Transform Serious Illness Care continues to grow. In the past few months, new and amazing stakeholders have joined in bringing the coalition’s mission to life including Caresource, United Health, Cleveland Clinic, The Benjamin Rose Foundation, Catholic Community Connection, Hospice of Cincinnati, Patient Advocacy MD and a Board Member of the Cancer Treatment Centers of America and the ALS Association.

Most recently this wealth of expertise and experience met to define the Ohio Coalition’s mission and commitment to ensure individuals with serious, chronic or advanced illness receive holistic care according to their goals, values and preferences and provide the necessary support to caregivers and healthcare providers to optimize that care.

The Ohio State Coalition to Transform Serious Illness Care continues to recruit talented individuals and organizations to enhance and facilitate the success of their mission and further identify additional goals such as ease of access to treatment, hospice and palliative care, improvement in quality of life for seriously ill patients and advocate for standards of excellence, education and the provision of resources for patients and their caregivers.

Oregon

The Oregon Coalition for Living Well with Serious Illness offers a new vision for serious illness care designed to deliver better patient and family experiences through a holistic and connected community ecosystem of care. The more than 100 individuals from over 50 different organizations that make up the Coalition have made quality of life for people and families living with serious illness its top priority and aim to implement an innovative model for Oregonians that could inspire other communities across the nation.

In April 2021, the Oregon Coalition launched a new website offering a central hub for information on the coalition’s mission and priorities. Check out their website today to find out how you can get involved!

In honor of National Healthcare Decisions Day, the Oregon Coalition, with support from Cambia Health Foundation, created a Public Service Announcement video called “You Can Have a Say.” Using the messaging principles created by a national coalition of organizations, the goal is to engage people and families living with serious illness in accessible conversations and resources about Advance Care Planning.

Connect with the Oregon Coalition on social media! Find them on Facebook or Twitter @ORLivingWell for news and resources of Coalition partners!

West Virginia

The steering committee for the West Virginia Serious Illness Coalition will hold its first meeting in June. The Hospice Council of West Virginia and the West Virginia Center for End of Life Care are working with leaders from the West Virginia University Department of Medicine, Quality Insights, WV Alzheimer’s Association, Marshall University’s Minority Health Institute, and the WV Bureau for Senior Services to create a vision and mission for the state.

In West Virginia, equitable access to Advance Care Planning is a leading challenge. The WV legislature recently passed a resolution to strongly encourage access to palliative care, however, the WV Serious Illness Coalition asserts that the state also needs to ensure the sustainability of community palliative care. Members of the steering committee are collaborating with Biddy Smith, QIN-QIO Program Director of Quality Insights on future projects to address these needs.


For more information about C-TAC’s work with state coalitions, please contact our Partnership Manager Sarah Park at SPark@theCTAC.org. We also encourage you to check the C-TAC website regularly for updates on our efforts to improve the lives of people with serious illness and their families.

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