Palliative Care State Policy
State policymakers increasingly recognize the value of palliative care—not only to the local health care delivery system and state Medicaid programs, but also to employers and families. Palliative care is one of the few solutions that simultaneously improves care quality, reduces burden on family caregivers, and results in more cost-effective use of resources.
Some states have spearheaded policy initiatives to increase access to palliative care, but more needs to be done.
Use this toolkit to learn the issues and opportunities, explore recent state initiatives, and access guidance on implementation. If you are developing or have completed a successful state policy initiative related to palliative care and would like to share your work with other states, please contact [email protected].
What’s in the Toolkit
The State-Level Palliative Care Policy Landscape
Learn about access to palliative care, as well as the laws and regulations that impact the care of the population with serious illness, in your own state.
List of state, local, and regional councils and collaboratives that focus on improving care for people living with serious illness.
Centralized repository to track and analyze palliative care policies across the entire United States.
Describes the state policy environment, including key audiences and ways to take action
2019 report on growth of hospital palliative care across the fifty states, gaps in access, and federal and state policy recommendations.
View your state’s report to find information about palliative care access in your state, along with recommendations to improve it.
Status tracker for state Palliative Care Advisory Councils or similar bodies. Includes relevant bills, statutes, and associated websites when available.
CAPC courses can meet state continuing education requirements for physicians and other licensed clinicians, including pain management, opioid prescribing, dementia/Alzheimer's Disease, and end-of-life care.
Searchable directory of specialty palliative care providers, filtered by care setting.
CAPC’s three-year national research project was the first nationwide scan of community palliative care programs.
The Commonwealth Fund, using claims data, developed estimates of adults with chronic conditions – a subset of which are considered high-need.
Getting Started at the State Level - Palliative Care Champions
Formulate a state policy strategy, including identifying priorities, cultivating partnerships, and communicating with policymakers.
Free, centralized forum for palliative care champions to share what they are working on at the state- and local levels.
Suggested activities for newly established state palliative care advisory councils.
Customizable report template for use by State Palliative Care Advisory Councils or similar bodies. Includes sample text, data sources, and citations.
Blog post with considerations for state policy to improve care for patients with serious illness.
Guide and recorded presentations to support palliative care champions as they cultivate and maintain community partnerships.
Presentation on key messaging considerations for palliative care professionals and advocates.
Recommended palliative care definitions and standards used for state legislation.
Compliance issues and considerations for programs working with financial partners.
Article in the Journal of Palliative Medicine describing how leaders in South Dakota used federal funding to establish a statewide palliative care network.
Blog post on how one state health care foundation got involved in palliative care.
State palliative care policies, initiatives, and lessons learned from California, Colorado, and South Carolina. CAPC National Seminar Presentation, 2017.
A deep dive into continuing medical education (CME) requirements across the country and how palliative care fits in.
For State Policymakers
Resources to identify high-impact state policies and initiatives that will advance palliative care access and quality.
Report from ATI Advisory and CAPC describing the barriers confronting dual eligible individuals living with serious illness, and opportunities for CMS, state Medicaid agencies, and D-SNP plans to promote access to palliative care.
Paper exploring how two types of Medicaid programs - Home and Community-Based Long-Term Services and Supports, and Health Homes - can better deliver primary palliative care under existing authorities, benefits, and program staff.
A summary of ideas and recommendations from small group listening sessions, conducted from late 2021 to May 2022.
Promising state policies and practices to advance access to quality palliative care.
How palliative care fills gaps in U.S. health care, and state-level policy recommendations to expand access to it.
Tools for employers and other collaborators to specify required benefits and network competencies. Catalyst for Payment Reform and Center to Advance Palliative Care, 2018.
Health Affairs blog identifying state levers to expand palliative care access - and how to get started.
Building a Medicaid Benefit
States are adding explicit palliative care benefits to their Medicaid plans. These resources provide the right building blocks to define the eligible population, the minimum services, provider capabilities, payment models, and qualilty reporting
Best practices in how to use data sources, such as claims or medical records, to identify patients who are most likely to benefit from palliative care.
Population health entities can use this list to proactively identify people with potentially unmet palliative care needs. Additional screening will be necessary.
Screening questions and burden assessments for case management of people with serious illness.
Compilation from the California Health Care Foundation on challenges and solutions to improve referral of Medicaid beneficiaries to palliative care services.
Recommended capabilities and competencies for payers and policymakers to contract with quality programs.
Clinicians and health care organizations can use CAPC’s training recommendations as a skills-building roadmap for physicians, advanced practice providers, registered nurses, social workers, chaplains, care managers, home health aides, certified nursing assistants, and speech-language pathologists caring for patients will serious illness.
Measures that can be used by payers and policymakers to ensure quality care for people living with serious illness.
Resource from the National Academy for State Policy that describes steps state policymakers can take to develop a specialized community palliative care benefit.
Additional Resources
Guidance from other organizations working at the state level to improve care for people with serious illness.
Promising policies and practices states can use to advance access to quality palliative care for state residents living with serious illness. National Academy for State Health Policy (NASHP).
CHCF policy initiatives and programming to increase access to palliative care in CA.
Excellent example of public-private partnership that developed in-depth recommendations to promote palliative care access and quality in Washington.
Webinars
BRIEFING: America’s Readiness to Meet the Needs of People with Serious Illness: The 2024 Serious Illness Scorecard
Free and open to all