A New Foundation for State Palliative Care Policy Activity

Recent policy successes have demonstrated that palliative care is a broadly supported, bipartisan solution to improving care for people living with a serious illness. To help continue this momentum, Stacie Sinclair, CAPC’s Senior Policy Manager, introduces new resources to support state champions in their efforts to further increase palliative care access and ensure quality.

2018 was a momentous year for palliative care policy.

The passage of the Palliative Care and Hospice Education and Training Act (PCHETA) in the U.S. House of Representatives, favorable remarks from the U.S. Department of Health and Human Services (HHS) Secretary on a potential palliative care payment model, and the establishment of Palliative Care Advisory Councils, or similar bodies, in over twenty-eight states since 2013, have demonstrated that palliative care is a broadly-supported, bipartisan solution to improving care for people living with a serious illness. In addition to promoting awareness of palliative care’s benefits to both providers and the public, many state champions are eager to continue this momentum by developing policy recommendations to improve access and ensure quality. New resources from CAPC and the National Academy for State Health Policy can help support states in this effort.

In 2018, the National Academy for State Health Policy (NASHP), a nonpartisan forum of policymakers throughout state governments received funding from The John A. Hartford Foundation to develop state palliative care resources. This was exciting for many reasons.

1. States hold significant power to create reliable access to timely and high-quality palliative care services in their roles as regulators, purchasers, educators, conveners, and consensus builders.
2. NASHP is a highly respected organization whose staff has spent decades facilitating collaboration among state policymakers to develop actionable strategies for policy change.
3. While resources developed under this two-year project will target policymakers, they can inform the work of the Palliative Care Advisory Councils and other palliative care champions working at the state level.
4. Finally, the recent growth in state palliative care policy activity has provided an opportunity to identify promising activities and lessons learned; this will help states avoid duplication of effort and unintended consequences of new policies.

To create a foundation for its work with state policymakers, NASHP staff conducted a 50-state environmental scan of existing state palliative care policies and programs. NASHP organized its findings into three areas:

• State Regulation of Palliative Care Services; e.g., defining palliative care, promoting palliative care delivery across care settings, and promoting clinician education.
• State Reimbursement Strategies (generally Medicaid); e.g., implementing palliative care benefits, paying for specific palliative care-related services, incorporating palliative care into state health care quality improvement strategies.
• Advancing Public Awareness and Stakeholder Engagement; e.g., establishing Palliative Care Advisory Councils and incorporating palliative care into state cancer control plans.

Based on these findings, NASHP identified several opportunities for future palliative care policy activity, including building workforce capacity, engaging public health agencies, developing a clear payment mechanism, implementing practice standards, and incorporating quality measurement and reporting requirements. The next phase of NASHP’s project involves working with its State Leadership Council to review the promising practices, and develop tools and resources to help states advance palliative care. Along the way, NASHP will provide updates and supplemental materials, such as its webinar on January 17, 2019 (recording can be found here).

While NASHP works with state policymakers, CAPC has continued to develop resources to support palliative care champions at the State level. These include a compilation of Palliative Care Definitions and Standards, which are critical to ensuring that palliative care is provided consistently and with adherence to the recently published National Consensus Project Clinical Practice Guidelines for Quality Palliative Care, 4th edition.

CAPC also recently developed a sample State Palliative Care Issue Brief, which describes the unmet needs of people living with a serious illness, current gaps in the U.S. health care system, and how palliative care fills those gaps. State champions are encouraged to tailor this brief to meet their needs and share it with relevant stakeholders.

These materials are in addition to CAPC’s other policy resources, including palliative care messaging guidance, state reports on hospital-based palliative care, and a literature review that highlights palliative care’s impact on areas such as length of stay, health care costs, quality of life, and patient and family satisfaction.

Finally, to support communication between palliative care champions at the state level, CAPC recently established the “State Palliative Care Forum.” This forum is an open platform in which participants can ask questions of each other and share their own resources and progress on state-level palliative care initiatives. Current participants include champions from twenty-seven states, as well as representatives from organizations such as the American Cancer Society, the National Hospice and Palliative Care Organization, the Hospice and Palliative Nurses Association, and the Coalition to Transform Advanced Care.

If you have any questions, or would like to join the forum, please email [email protected] (free and simple registration required).