As federal policymakers respond to increasing pressure to improve the value of taxpayer spending on Medicare and Medicaid, there are numerous policy opportunities in the care of people with serious illness. 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.

Both the legislative branch (Congress) and the executive branch (particularly government agencies such as the Centers for Medicare & Medicaid Services) can play a significant role in improving access to palliative care through workforce investment, reimbursement, and promoting needed research.

Use this toolkit to learn about issues and opportunities for federal action and explore recent federal palliative care initiatives that impact the care of people living with serious illness, and their families. If you have questions or suggestions, please contact [email protected].

What’s in the Toolkit

Learn about the gaps and opportunities in the U.S. health care system for improving access to quality care for people with serious illness.

Federal Policy 101

Highlights key federal policy audiences, and legislative and regulatory opportunities for action.

A National Strategy For Palliative Care

Illustrates the gaps in care for people with serious illness, and the need for a national strategy to ensure reliable access to high-quality palliative care. Health Affairs, 2017.

National Academy of Science, Engineering and Medicine (NASEM) Roundtable on Quality Care for People with Serious Illness

NASEM has convened experts from across the country to explore the gaps and opportunities for improving the care of people with serious illness.

2019 State-by-State Report Card

2019 report on growth of hospital palliative care across the fifty states, gaps in access, and federal and state policy recommendations.

Individual State Palliative Care Reports

View your state’s report to find information about palliative care access in your state, along with recommendations to improve it.

Questions, Comments, and Links from the National Coalition for Hospice and Palliative Care Advocacy Town Hall (April 7, 2021)

Compilation of relevant policy background and advocacy opportunities to advance palliative care in the Biden Administration and 117th Congress.

Review and act on federal policy recommendations to improve access to specialty palliative care and advance quality of care for all people with serious illness.

Summary of Concurrent Care Models

At-a-glance information across nine models of simultaneous disease-directed and palliative services.

Health Equity Policy Recommendations

Compilation of policy recommendations to improve the care of Black patients living with serious illness and their families.

Recommendations for Opioid Exemptions

With federal and state guidelines increasingly restricting access to opioids, these recommendations from the Patient Quality of Life Coalition provides recommendations for how to exempt people living with serious illness

National Coalition for Hospice and Palliative Care Recommendations for the 117th Congress and the Biden Administration

Comprehensive set of Federal legislative and regulatory recommendations to improve care people living with serious illness. Developed by the National Coalition for Hospice and Palliative Care.

Palliative Care and Hospice Education and Training Act (PCHETA)

Federal bill addressing the workforce deficiency, public awareness and research funding by expanding physician and nurse training, and supporting research and public awareness initiatives.

National Academies of Sciences, Engineering, and Medicine (NASEM) Workshop: Building the Workforce We Need to Care for People with Serious Illness

Proceedings from the 2019 NASEM Workshop that explored challenges and opportunities related to educating, training, and retaining the full spectrum of the workforce for serious illness care.

Flex Your Advocacy Muscles with the Palliative Care and Hospice Education and Training Act

Blog post on promising palliative care education legislation.

Resident Physician Shortage Act

Federal bill that would address nationwide physician shortages by adding 15,000 Medicare-support residency positions over five years, and require that half of these positions be dedicated to shortage specialties. Supported by the National Medical Association as a mechanism for quickly increasing the number of physicians of color entering the workforce.

Provider Training in Palliative Care Act

Federal bill that would include palliative care medicine as an eligible primary care service through the National Health Services Corp, making existing scholarships and loan repayment opportunities available to those specializing in palliative care.

Payment and Program Financing

Advancing palliative care payment from both public and private payers.

Financing and Payment Strategies to Support High-Quality Care for People with Serious Illness

Summary of a National Academies of Science, Engineering and Medicine roundtable on new care delivery models people living with serious illness, particularly in community settings.

Advancing Standards of High-Quality Care for Patients with Serious Illness in America's Hospitals

A proposal to create a Medicare Incentive Program for comprehensive palliative care services in eligible hospitals.

The Need for Investment in Palliative Care Research

The National Coalition for Hospice and Palliative Care describes why investment in palliative care research is needed and priorities for moving forward.

Links to federal policy action centers from partner organizations.

American Academy of Hospice and Palliative Medicine Legislative Action Center

Use the Legislative Action Center to respond to AAHPM's Action Alerts, review the legislation that AAHPM is monitoring, or use communication tools to connect with your elected officials about any issue desired.

Hospital and Palliative Nurse Association Advocacy Action Center

Online platform from the HPNA to easily take action on important topics, share your experiences, and contact key stakeholders.

National Association for Home Care & Hospice Advocacy Center

Online platform from NAHC to connect with elected representatives about the success of home health, hospice, and palliative care from experts in the field.

National Hospice and Palliative Care Organization Hospice Action Network

Online form to call, email, and send messages to Members of Congress on social media, urging them to support for hospice and palliative care programs.

Guidance from other organizations working to improve care for people with serious illness.

National Coalition for Hospice and Palliative Care

Home to the National Consensus Project for Quality Palliative Care, the Coalition was founded by the leading hospice and palliative care organizations to coordinate and collaborate on issues and activities of importance to the interdisciplinary hospice and palliative care field.

Patient Quality of Life Coalition

40+ organizations working to ensure access to high quality palliative care for all people living with serious illness.

Coalition to Transform Advanced Care

C-TAC works to ensure that all individuals living with serious illness receive comprehensive, high-quality, person- and family-centered care that is consistent with their goals and values.

Bipartisan Policy Center

Report on the policy barriers to access and quality, and recommendations to overcome these barriers.

Duke-Margolis Center for Health Policy

Improve health and the value of health care through practical, innovative, and evidence-based policy solutions.

Implementing change at the state level. Includes 39 resources.
A coordinated effort to develop a national strategic plan to incentivize the delivery of high-quality care for people living with a serious illness. Includes 12 resources.
Tools to help payers, policymakers, and providers understand best practices for delivering quality care during a serious illness, and to identify certifications that demonstrate adherence to third-party quality standards. Includes 32 resources.

See all 47 Toolkits

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