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 training, financing, enhancing accountability, and promoting needed research.

Use this toolkit to learn about issues and opportunities for federal action, explore recent federal palliative care initiatives, and access guidance on policy implementation. If you are developing or have completed a successful federal policy initiative related to palliative care and would like to share your work, please contact paymentandpolicy@capc.org.

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.

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.

National Palliative Care Research Center

A national effort to strengthen the cadre of scientists working to advance the evidence base for access to high-quality care of people living 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.

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.

Introducing a New Administration to Serious Illness

The installment of a New Administration presents a crucial opportunity to educate a brand-new audience on the challenges of living with serious illness and the barriers in caring for these patients and their families/caregivers.

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.

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

Blog post on promising palliative care education legislation.

Advanced Alternative Payment Model

The American Academy of Hospice and Palliative Medicine (AAHPM) and the Coalition to Transform Advanced Care (C-TAC) are supporting the development of an alternative payment model (APM) for the care of Medicare beneficiaries with serious illness.

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 deliery models people living with serious illness, particularly in community settings.

Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness

Summary of a National Academies of Science, Engineering and Medicine roundtable on recommendations to improve access to palliative care.

Recommended Standards for Hospitals and SNFs

Structures and processes that all hospitals and skilled nursing facilities need to assure access to high-quality care for people with serious illness.

Meeting the Needs of Older Adults with Serious Illness

How the principles of palliative care address many of the key challenges faces the U.S. health care system. Book authors: Diane E. Meier. MD, FACP, and Amy S. Kelley, MD, MSHS. 2014.

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.

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.

Special Edition of the Journal of Palliative Care

March 2018 issue dedicated to quality measurement and accountability for community-based care for people living with serious illness.

Health Affairs Issue on Advanced Illness and End-of-Life Care

July 2017 issue on policy and delivery issues in caring for people with serious illness.