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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 policy and practice change that improves care for all people living with serious illness. 

We periodically check in with our members and partners to provide an update on these coalitions. These Field Reports will highlight efforts to drive community-level change around the nation. Stay tuned for more about the work of these coalitions and to learn more about how you can get involved!

The following updates have been provided by the state coalitions:

Arizona

The Arizona End of Life Care Partnership (EOLCP) began in 2017 as a small coalition of people and organizations that had a shared vision to improve end-of-life care in Tucson by fundamentally changing the way we talk about death. This work was propelled by generous support from funders and increased participation from community organizations. The EOLCP currently has over 350 stakeholders, 30 investors, and 18 grantee organizations. United Way of Tucson and Southern Arizona acts as the anchor organization for the EOLCP, utilizing the strengths of its mission to build a thriving community by uniting people, ideas, and resources.

The EOLCP provides navigation and connection to robust partner resources and information. Rich in diversity, the organizations that collaborate with the EOLCP represent health care; social services; private and public businesses; legal and financial organizations; and educational institutions. The EOLCP highlights and promotes the work of their grantee partners and investing partners who work in Southern Arizona to enhance the way we live by striving together to normalize end-of-life conversations and planning.

The EOLCP has just completed their fourth year of community impact work focused on serious illness and end-of-life care. As part of this work, the Partnership conducted extensive strategic planning for their six cross-sector Action Teams, all of which share the same long-term goals and drive the work of the Partnership as a whole. These Action Teams created action-oriented work plans with short-term and intermediate goals focusing on their specific areas: Community-Based Education, Community Outreach, Professional Education, Policy & Advocacy, Partner Development, and Workplace Initiatives.

The end of April marked the completion of year one of a three-year Systems Change grant with opportunity youth (people aged 16-24 who are disengaged from education and employment) that was funded by the Vitalyst Health Foundation. This work focuses on providing support for bereavement which was identified by opportunity youth in the juvenile justice system as a major trauma. 

In June, the Associate Vice President of the EOLCP, Sarah Ascher, was invited to speak about the Partnership at the Florida Palliative Care Coalition meeting in Orlando. The enthusiasm for this unique collaboration was noteworthy and the EOLCP is receiving attention as a national model.

California

The Coalition for Compassionate Care of California (CCCC) had big reason to celebrate this summer when Governor Newsom signed the health bill that included a budget allocation to the Emergency Medical Services Authority (EMSA) for a statewide electronic POLST registry. Additional funding is included on an annual basis to support POLST quality through education and community outreach. The signing ceremony on July 27 represented the culmination of years of work on the part of CCCC, our supporters, and serious illness care stakeholders throughout California. CCCC is now working with EMSA on next steps in this exciting project that will help ensure people’s wishes for care are honored.

In June, CCCC received a grant from the WITH Foundation to promote advance care planning (ACP) with adults with developmental disabilities. Since 2006, CCCC has been working with this community to help them achieve greater control over the care they receive should they face serious illness. With this grant, CCCC will work with staff, advocates, and clients at two California regional centers to develop and pilot-test advance care planning tools, training, and resources. Using CCCC’s “Thinking Ahead: My Way, My Choice, My Life at the End” workbook as a foundation, the resources and trainings will be designed to empower adults with developmental disabilities to explore, express, and record their wishes regarding serious illness and end-of-life care. 

Finally, CCCC was very pleased to announce in August the creation of a new Advisory Board to provide insight, advice, and context to the CCCC staff and Board of Directors on current issues and controversies affecting the field of serious illness care. The Advisory Board consists of seven diverse professions with expertise in the healthcare industry. We are honored to welcome them to the CCCC team!

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.

We actively support Hawaii’s Medicaid program in creating a CMS-approved palliative care benefit. Our June 26 statewide summit, in partnership with Votive Health and a grant from the Stupski Foundation, presented the benefit to the community. We are currently soliciting provider feedback.  

Our statewide palliative care awareness Task Force is examining national research and materials to develop a communication strategy for the public and professionals in Hawaii. Updating our website, testing messaging, and a student-led Instagram campaign are part of this strategy. 

Kōkua Mau continues providing ACP trainings virtually, with unions, retired teachers, caregiver groups and professionals from health plans, health systems and agencies supporting those with serious illness. As the lead agency for POLST, we are educating providers and the public. We support the Bereavement Network of Hawaii to provide relevant information and resources.  Finally, we strive to support providers who are so impacted in this latest COVID surge, as a one stop resource for excellent COVID related materials (e.g. developed by national POLST, CAPC and VitalTalk) on our website and frequent newsletters.

Massachusetts

The Massachusetts Coalition for Serious Illness Care aims 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. Recently, the coalitions welcomed three new member organizations; South Shore Health, Almgren Law Group, and Care Navigate. The coalition has been working with a student at Harvard Medical School on a potential health care proxy volunteer program. The Massachusetts Coalition shared the most up-to-date national research findings at their virtual summit on October 14, 2021. 

Minnesota

On August 13, the Minnesota Coalition hosted their second annual Serious Illness Action Network virtual summit, titled Palliative Care Virtual Summit: Practice, Policy and Payment. The summit had over 100 participants representing providers, legislators, state agencies, health plans, and advocates.

The summit had three core goals:

  • Discuss payment challenges and opportunities related to palliative care for providers and payers.
  • Describe the current state of palliative care payments in Minnesota.
  • Agree on, and commit to, actionable ways to move palliative care payments forward in Minnesota.

Participants heard presentations from state and national palliative care payment experts and participated in small group facilitated discussions designed to elicit participant’s ideas on the best way forward. The summit ended with a panel discussion with Senator Karin Housley, Representative Liz Reyer, Gretchen Ulbee from the Minnesota Department of Human Services, and Patrick Courneya, Chief Health Officer at Health Partners.

The result of the summit were recommendations, considerations, and advice from the participants and speakers as we move forward in MN. Stay tuned for a full report on the outcomes of the virtual summit!

The coalition is currently in the planning stages of a Fall Forum on Caregiving, to be held on Nov. 8, 2021. It will be a two-hour virtual session that will focus on the needs and opportunities to support caregivers of those with serious illness.

New Jersey

The Goals of Care Coalition of New Jersey (GOCCNJ) is proud to announce the launch of Your CarePlan™ to healthcare systems, private practices, and long-term care facilities. Your CarePlan  is a video guided POLST completion tool created to help patients make informed choices about treatment decisions. Designed for use by healthcare professionals, Your CarePlan scripts the conversation around end-of-life (EOL) decisions. Using the tool will help to improve health literacy and ensure informed consent is obtained when completing the POLST form. Your CarePlan is intended to be used with patients who are POLST eligible, their families or decision-makers to facilitate a conversation about goals of care and provide a standardized explanation of the options for care, either as part of an in-person care plan meeting or via a telemedicine appointment. After each section of the form is completed, the answers will automatically populate the POLST form that can then be printed out for both the patient and physician, APN or PA to sign. Use of Your CarePlan to complete a POLST form can help healthcare providers across the care continuum deliver goal concordant care to patients, may reduce hospital readmissions, increase referrals and earlier access to palliative and hospice care, and reduce the burdens of serious illness on patients and their caregivers. Your CarePlan was recently launched within select private primary care practices affiliated with Penn Medicine Princeton Health in an effort to move the conversation upstream. In partnership with the Robert Wood Johnson Barnabas Health System and the NJ Department of Health, 50 long-term care facilities will also have access to Your CarePlan beginning in mid-September. The Your CarePlan program consists of: video guided POLST completion tool, healthcare professional on-demand and live training, support materials for patients and their decision-makers, newsletters, and technical support. Contact Jessica Brown jbrown@goalsofcare.org for more information or to request a demo of the tool.  

Pennsylvania

The Pediatric Palliative Care Coalition (PPCC) has had a busy year working in Pennsylvania and collaboratively across the country to provide education, resources and advocacy for families and medical professionals caring for children with life limiting illness.  Through the pandemic our virtual programming has grown exponentially as we have reached out our vulnerable population.  

The Pediatric Palliative Care Webinar series provides monthly webinars for the entire interdisciplinary team caring for pediatric patients.  Most recently, Kat O’Donnell presented on the topic of sensitivity in clinical practice with transgender youth.  This series is in partnership with the Greater Illinois Pediatric Palliative Care Coalition and the Children’s Hospice and Palliative Care Coalition in California.  It’s a great example of a collaborative effort for greater impact.  Stay tuned for our upcoming webinar on expressive and integrative therapies!

PPCC has also launched a virtual series of Firefly Chats aimed at bringing parents and clinicians together for informal discussions on a wide variety of topics.  We recently featured the mom of a child with medical complexity and a pediatric palliative care physician to have an open discussion on the challenges of communication during the time of COVID. This and previous Firefly Chats are available for viewing on our website (ppcc-pa.org)

We’re also excited about two new collaborative projects.  PPCC is working with a research team from University of Pittsburgh on a Collaborative Filmmaking Project that will empower families to document their bereavement journey following the death of a child.  The films produced will be used to inform clinicians, as well as the public, on this most difficult topic. We are also working with the Jewish Healthcare Foundation and PA POLST on a pediatric unit as a part of a newly designed PA POLST curriculum.

PPCC advocacy efforts have been targeted nationally on passage of the PCHETA legislation and locally, as a part of the Family Paid Leave Coalition, on PA legislation for paid family leave.

We continue to serve as a hub for communication and collaboration of statewide pediatric palliative care coalitions across the country.  We’re excited to see increased energy in new coalitions and pleased to be of service as they coalesce and grow.  Recently, CTAC’s State and Community Organizing Team joined one of our national networking calls to highlight programming and resources. 


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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