CAPC Rolls Out Database on Public Palliative Care Policy

The Center to Advance Palliative Care (CAPC) has rolled out a publicly accessible database that tracks state policies on palliative care and related services. Development of the database comes at a time when public policy is evolving to facilitate the rising demand for serious illness care.

Developed in concert with the Solomon Center for Health Law and Policy at Yale Law School, the Palliative Care Policy GPS (or GPS) database tracks the movement of relevant legislation and regulation across the 50 states, as well as U.S. territories, the Indian Health Service (IHS) and the Veterans Administration (VA). 

The database is also designed to encourage policy innovation that would reduce health care disparities, and support research and development in the field.

“The ability to deliver high-quality palliative care to all people who are living with serious illness depends on the policy environment in which programs operate,” Stacie Sinclair, CAPC’s associate director for policy, told Hospice News. “Over the last decade, we have seen significant growth in the number of state-level policies to support palliative care. The Palliative Care Policy GPS is a tool to better understand opportunities and innovations that have occurred and identify lessons learned to inform the next wave of policymaking.”

The swelling aging and seriously ill population is contributing to a growing need for palliative care. The U.S. Census Bureau projected that the number of seniors 65 and older will reach 95 million by 2060, representing nearly 25% of the nation’s overall population. This is up from 49 million in 2016, or about 15%.

Hospices are uniquely positioned to provide this care. While palliative care is a distinct care model from hospice, symmetries exist between the two. Roughly 50% of community-based palliative care providers in the United States are hospices, according to 2020 data from CAPC.

Reimbursement and policy has thus far been insufficient to support palliative care at the necessary scale to meet this need. Currently, the U.S. Centers for Medicare & Medicaid Services (CMS) covers palliative care physician and nurse practitioner services, but the model does not include the full range of interdisciplinary care. Establishing a dedicated Medicare benefit has been a mounting priority for providers and industry groups, as well as some lawmakers.

In July, the four founding members of the Senate Comprehensive Care Caucus introduced the Expanding Access to Palliative Care for Seniors Act. If enacted, the bipartisan bill would push the Center for Medicaid & Medicare Innovation (CMMI) forward in the process to test/roll out a community-based palliative care demonstration. Established in 2019, the caucus pursues legislative actions to raise awareness of palliative care, promote utilization, improve care coordination, support caregivers and expand access to services.

Meanwhile, regional policy has also been moving forward as more states adopt avenues to expand palliative care. At least 27 states have laws on their books intended to increase public awareness and utilization, according to the National Academy for State Health Policy (NASHP). The Illinois State Assembly in June passed the Pediatric Palliative Care Bill (SB.2384) to create an in-home palliative care benefit for children facing life-limiting conditions. In route for signing, the bill aims to make community-based, interdisciplinary palliative care services more accessible to patients and reimbursable for providers.

California may have the most robust approach to palliative care among the states. As of 2018, that state requires its Medicaid managed care plans to cover palliative care for patients suffering from cancer, end-stage liver disease, chronic obstructive pulmonary disease, or congestive heart failure.

The variation among state actions can make it difficult for stakeholders to keep track of new developments, which forms part of the impetus for development of the Palliative Care Policy GPS, according to Sinclair.

“Our eventual goal is for the GPS to be a ‘one-stop-shop’ for all state and federal policies that facilitate palliative care access” said Sinclair. “Given this scope and the breadth of policies that directly and indirectly impact palliative care, the initial hurdles were deciding where to start and developing inclusion and exclusion parameters. On the research and policy side, the GPS will also enable us to begin identifying trends, not only to inform strategic planning, but also to create a foundation to evaluate impact.”

Currently, the GPS includes state legislation introduced as of 2019. The database will expand in coming years to include regulations and policies formed since 2010, a move intended to capture and analyze information that will improve health care through evidence-based policymaking, according to Sinclair.

This project also marks the most recent expansion of the Solomon Center’s palliative care initiative, developed in conjunction with the Palliative Medical Legal Partnership, the Palliative Care Working Group, and the Elder Law Project. The Solomon Center focuses on the intersection of law and the governance, practice, and business of health care, and the training of the next generation of lawyers, industry leaders, policymakers and academics in health care.

The Solomon Center’s group of palliative care scholars, practitioners and advocates provided information on the function and future of CAPC’s Palliative Care Policy GPS database. One focus was to support a range of research and studies on palliative care with findings focused into targeted policy recommendations.

“There is a great need for palliative care research to increase the evidence base for the field and subsequently improve care for patients and families facing serious illness,” said Dena Shulman-Green, associate professor at the New York University Rory Meyers College of Nursing and a member of the Solomon Center’s working group, in a Yale Law School report.

The GPS platform is also intended to improve access and quality of palliative care. Though the prevalence of available palliative care is improving, less that 5% of patients with serious illness who could benefit from palliative care actually receive it, according to a 2019 report by the NASHP. Recent research found that as many as 90% of people in the United States do not understand the nature of palliative care.

The GPS will serve as a mechanism to inform state legislature movement and also with a hope to build connections between providers to learn from and support one another, according to Sinclair.

“The GPS provides another layer to this discussion by looking at the local policy environment which can facilitate or create barriers to access,” Sinclair said. “It already shows us differences in the number of policies that states have introduced, as well as tremendous heterogeneity in the types of policies introduced. The additional information can serve as a catalyst to action that can hopefully bring more standardized access across the country. We hope that palliative care [providers] see this tool as theirs, since they are the ‘boots on the ground’ essential for bringing about change.”