A coalition of professionals, experts, and advocates for the ‘voice of serious illness care in North Carolina’.
The Coalition’s many dedicated members have brought information, passion, and determination to make a difference for people across NC using their unique perspectives and backgrounds and skills through our four working groups – Clinical Practice & Quality, Advance Care Planning, Caregiver & Patient Engagement, and Communications/Advocacy/Education.
These groups have initiated and fostered needed legislation, organized important forums on critical issues, built further alliances around caregiving, brought about crucial conversations, and provided necessary space for relationships to grow in order to further meet people’s needs. Learn more about our work in our latest Progress Report.
Interested in becoming a member? Contact us here.
Learn more about our work groups:
The Clinical Practice Work Group is committed to improving the quality of care for seriously ill patients in North Carolina. The goal of the work group is to assure consistency in palliative and end-of-life care throughout the state.
Our Action on Recommendations
During 2021, the Clinical Practice & Quality Work Group hosted a series of continuing education programs focused on predictive analytics, financing care, spirituality, and roles and responsibilities of clinical providers. These recorded programs featured clinical and administrative experts who offered insights and opportunities for colleagues to examine current practice and ways to more effectively provide high quality care.
Our Next Steps
Following two years of the pandemic, the clinical practice work group, like many national experts, sees an even greater imperative to focus on the provision of goal concordant care to the seriously ill population. This year the work group plans to work with NCSI Coalition members to develop a directory of palliative care services in North Carolina. The work group will also actively examine the changing field of clinical care by focusing on the challenges of frailty and the importance initiating clinical conversations and documentation that result in goal-concordant care. Several programs will focus on these topics and will guide recommendations of the group.
The purpose of the NCSI Coalition Advance Care Planning (ACP) Work Group is to make it easier for North Carolinians to learn about, complete, and access advance directives and portable medical orders (including the MOST form), so that each individual receives care aligned with their personal goals and wishes.
Our Action on Recommendations
- DEVELOPED PLAN TO ALIGN NC MOST FORM WITH NATIONAL POLST AND SET THE STAGE FOR ELECTRONIC PORTABLE MEDICAL ORDERS A subcommittee has worked diligently to enhance portable medical orders in NC for the short and long term. Revisions have been drafted to the NC portable DNR order and to align the NC MOST with National POLST and have been reviewed with a number of stakeholders. Changes proposed to the portable DNR form do not require legislative change and are currently under review by the Ethics and Judicial Affairs Committee of the NC Medical Society, preparatory to acceptance by NC Office of Emergency Management Services (OEMS) – hopefully by mid-2022. Planning has begun related to legislative changes which would align the NC MOST with POLST and to adopt electronic documents.
- INITIATED PLANNING FOR COMMUNICATION SKILLS TRAINING SPECIFIC TO NEEDS OF HISTORICALLY MARGINALIZED AND RURAL PATIENT POPULATIONS Recognizing that communications skills training is offered at major healthcare systems, a sub-committee has proposed provider trainings focused on serving historically marginalized and rural patient populations, including an outreach to engage local community influencers. Final plans will be shaped by the results of a research study, for which The Carolinas Center (TCC) is the fiscal agent, to test use of the Serious Illness Conversation Program from Ariadne Labs in communities of color.
- SUPPORTED LEGISLATIVE EFFORT TO SIMPLIFY ADVANCE DIRECTIVE SIGNATURES The ACP workgroup took the lead in promoting legislation to simplify completion of a valid advance directive by replacing the need for BOTH two disinterested witnesses AND notarization with allowing EITHER two disinterested witnesses OR notarization. Senate Bill 666 passed unanimously in 2021 and its companion House bill is slated for consideration in the 2022 short session.
- CREATED GLOSSARY OF TERMS RELATED TO ADVANCE CARE PLANNING In order to support consistent use of messaging and reduce confusion about the various elements of Advance Care Planning the work group created a draft glossary of terms. When finalized, this will be used as a companion piece to materials and education efforts produced by the Coalition.
- PROVIDED WORKSHOPS ON ADVANCED CARE PLANNING Workshops were offered in the spring of 2022 to align with National Healthcare Decisions Day. The ACP and Clinical Practice work groups combined efforts to host a 2-part “lunch and learn” style educational offering in April 2022, focused on ACP and Goals of Care communication skills with the theme – “It’s a team sport”. This effort was supported by Area L AHEC, offering the opportunity for free education credits for various clinical disciplines, and both were well attended.
Our Next Steps
Finalize and advance interdisciplinary communications skills training plan
Learning from the results of the Serious Illness Conversation Program and working with The Carolinas Center, the work group will continue efforts to develop and offer programs to enhance support for historically marginalized and rural populations.
Promote changes, including specific legislative revisions, to enable alignment of the NC MOST with National POLST model, including electronic MOST/POLST
The subcommittee focused on enhancing the MOST form will continue to obtain stakeholder input on proposed changes to the MOST/POLST form and will work with representatives from the NC Health Information Exchange Authority to facilitate electronic versions of the form. Introduction of enabling legislation for both the new MOST/POLST form and electronic recognition will be targeted for the 2023 session.
Some changes recommended to the current North Carolina MOST and/or the Portable DNR form do NOT require legislative approval and would move North Carolina’s practices towards greater alignment with National POLST.
Work group members have been working with the North Carolina Office of Emergency Medical Services and North Carolina Medical Society to try and secure the necessary buy-in to make these changes as soon as possible.
Improve tools for ACP
Finalize and achieve consensus on the glossary of Advance Care Planning terms and launch for use in conjunction with new materials.
Promote awareness of ACP
The work group is looking to host a consumer focused informational session in 2022, and will pursue this effort pending finalization of the Glossary of Terms to support the consistency and clarity of all Coalition presentations.
Improve professional education on ACP
Provide clinical practice forums specific to ACP. In addition to the March/April “It’s a team sport” concept offered in the spring of 2022, the work group plans to host workshops focused on other ACP related topics in partnership with the Clinical Practice and/or Caregiver & Patient Experience work groups.
The purpose of the Caregiver and Patient Engagement Work Group is to develop action plans that address two priority recommendations from the NCIOM Serious Illness Task Force. These recommendations support patient, family, and caregiver engagement through efforts to revise/create policies and processes that address the financial burden and physical and mental well-being of family caregivers.
Our Action on Recommendations
- CAREGIVING COLLABORATIVE FORMATION Members of the Caregiver & Patient Experience (CPE) work group, members of two other coalitions (the North Carolina Coalition on Aging and the Children’s Complex Care Coalition of North Carolina) and other stakeholders formed the Caregiving Collaborative and began meeting in late 2021 to align efforts around support for caregivers of those with serious illness across the lifespan in North Carolina. The Caregiving Collaborative group plans to work together toward raising awareness of serious illness caregiving issues, advocating for better support for caregivers, and improving patient engagement in health care.
- NAC UNIFIED STATE STRATEGY INITIATIVE North Carolina was one of 5 states invited to participate in this National Alliance for Caregiving initiative. CPE work group members attended educational webinars on topics related to task force establishment and coalition building for advocacy to help support caregivers across the lifespan. Mentoring sessions with other states that formed caregiving coalitions and/or established caregiving task forces were invaluable for helping our group clarify its mission and continue the momentum it had built.
- HOSTED CAREGIVING FORUMS To better inform Serious Illness Coalition members on issues faced by caregivers, the work group hosted two forums in 2021. The first was a research presentation about the state of family support policies in the United States and how these may inform the work group’s efforts. The other was a screening of the documentary Caregiver: A Love Story, followed by a short discussion about challenges faced by caregivers.
Our Next Steps
Caregiver Listening Sessions
CARES Act funds were secured through the North Carolina Department of Health and Human Services to study the effects of the Covid-19 pandemic on caregivers. A subgroup of the CPE work group is finalizing a proposal to use the funds to host up to 6 virtual listening sessions throughout North Carolina with small groups of diverse caregivers to learn more about existing needs, challenges, gaps, and barriers.
The CPE work group plans to host at least two caregiver and patient engagement forums in 2022, to help Coalition members and other stakeholders understand the challenges, gaps, and barriers to support for caregivers
of those with serious illness across the lifespan.
Additional Funding Opportunities
The CPE work group will consider additional potential funding opportunities for advocacy and awareness-raising purposes.
Task Force Establishment
Much of the work group’s efforts will continue to focus on the establishment of a state-level task force. Documents completed by work group members to support this effort include:
- Return on investment report – compiled from existing research and reports with data on caregiving across the lifespan, and specific to North Carolina where possible.
- CPE work group charter updates – the charter identifies recommended tasks for the task force to undertake, once formed.
- Recommended task force member list
These documents can be provided for reference to the Task Force, when and if it is formed.
The NC Serious Illness Coalition Communications, Advocacy and Education working group is a vital support mechanism to foster active collaboration and cooperation across all work groups that comprise the NCSI Coalition. The work group will accomplish this by providing communications expertise, gathering useful information and disseminating that information via various communications channels, advocacy best practices, and educational tools.
Our Action on Recommendations
- Developed brand materials It’s hard to be the “Voice of Serious Illness Care in North Carolina” without a voice, right? The team met and determined many different elements of a cohesive organizational brand strategy to best support the Coalition members and each of the different work groups.
- Developed communications plan To get the Coalition’s initiatives advanced, members and Work Groups shared their primary needs in advancing the recommendations of the North Carolina Institute of Medicine’s Task Force on Serious Illness Care. One key to evolving serious illness care in North Carolina is to raise awareness of the options and opportunities that exist to own one’s health and plan for care in advance as well as build sustainable solutions with industry leaders who recognize that collective action can have much needed impact on future legislation and practices.
- Supported ACP advocacy efforts One of the many ways that the Coalition works to connect North Carolinians with their own serious illness care is through drawing attention to advance care planning (ACP) in collaboration with the ACP working group as well as encouraging increased adoption and utility of the ACP documents. The work group supported these efforts through various channels, and continue to collaborate in educating and motivating communities to make advance care planning part of their day-to-day health practices. Part of this collaboration includes the Coalition’s close communication and coordination with The Association for Home & Hospice Care of North Carolina (AHHC) along with the AHHC Governmental Affairs staff and lobbying team regarding the Coalition’s advocacy efforts, most notably SB 666.
- Built more robust website The website is a core resource where Work Groups share information and the public can access content including our recorded Friday Facts interview series with industry leaders, healthcare professionals, and community organizers from North Carolina and beyond.
Our Next Steps
Advocate for Legislative Changes Consistent With North Carolina Institute of Medicine’s Task Force on Serious Illness Care recommendations
This Work Group will continue its work advancing awareness and adoption of the recommendations through increased connection with media, Coalition members, and community leaders.
Support the Remote Online Notary bill
We will be taking steps to encourage increased awareness and comprehension of legislation that increases accessibility to advance care planning documentation.
Expand the North Carolina Serious Illness Coalition Website
Enhance our current website with increased resources for community leaders, caregivers, and individuals seeking more information about being able to own their health and plan for care in advance. The expanded site will also increase access to additional serious illness resources.
Introduce Opportunities to Collaborate with the Direct Care Workforce, Industry Leadership, and Elected Officials
Through targeted education and awareness live and virtual events such as Friday Facts as well as live forums, we will be expanding more opportunities to hear the many voices invested in the future of serious illness care.