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

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.

The Palliative Care Policy GPS

Centralized repository to track and analyze palliative care policies across the entire United States.

State Policy 101

Describes the state policy environment, including key audiences and ways to take action

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.

State Advisory Council Legislation Tracking

Status tracker for state Palliative Care Advisory Councils or similar bodies. Includes relevant bills, statutes, and associated websites when available.

Locating Discipline-Specific CE Requirements by State

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.

Get Palliative Care Provider Directory

Searchable directory of specialty palliative care providers, filtered by care setting.

Mapping Community Palliative Care

CAPC’s three-year national research project was the first nationwide scan of community palliative care programs.

Estimated Adult High Need Population by State

The Commonwealth Fund, using claims data, developed estimates of adults with chronic conditions – a subset of which are considered high-need.

Formulate a state policy strategy, including identifying priorities, cultivating partnerships, and communicating with policymakers.

Instructions to Join the State Palliative Care Basecamp Forum

Free, centralized forum for palliative care champions to share what they are working on at the state- and local levels.

Advisory Council Suggestions for Getting Started

Suggested activities for newly established state palliative care advisory councils.

State Advisory Council Template

Customizable report template for use by State Palliative Care Advisory Councils or similar bodies. Includes sample text, data sources, and citations.

Getting Started with State Coalitions and Associations

Blog post with considerations for state policy to improve care for patients with serious illness.

Coalition to Transform Advanced Care Community Engagement Toolkit Companion Guide

Guide and recorded presentations to support palliative care champions as they cultivate and maintain community partnerships.

Reframing Palliative Care: Messages Matter

Presentation on key messaging considerations for palliative care professionals and advocates.

State Definition and Standards

Recommended palliative care definitions and standards used for state legislation.

Regulatory and Licensure Considerations for Community-Based Palliative Care

Compliance issues and considerations for programs working with financial partners.

Access to Palliative Care Services: Innovative Development of a Statewide Network

Article in the Journal of Palliative Medicine describing how leaders in South Dakota used federal funding to establish a statewide palliative care network.

Reflections from a Palliative Care Champion – California’s Kate O’Malley

Blog post on how one state health care foundation got involved in palliative care.

State-Level Interventions to Expand Access to Palliative Care

State palliative care policies, initiatives, and lessons learned from California, Colorado, and South Carolina. CAPC National Seminar Presentation, 2017.

Blueprint for Faith-Based Engagement

Guidance for faith leaders to improve collaborations and community engagement. Coalition to Transform Advanced Care.

Leveraging CME Requirements to Improve Palliative Care Delivery

A deep dive into continuing medical education (CME) requirements across the country and how palliative care fits in.

Resources to identify high-impact state policies and initiatives that will advance palliative care access and quality.

Meeting Palliative Care Needs in Existing Medicaid Programs

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.

State Opportunities to Improve Palliative Care Access

A summary of ideas and recommendations from small group listening sessions, conducted from late 2021 to May 2022.

National Academy of State Health Policy (NASHP) Resource Hub: State Strategies to Address Palliative Care

Promising state policies and practices to advance access to quality palliative care.

State Issue Brief

How palliative care fills gaps in U.S. health care, and state-level policy recommendations to expand access to it.

Purchaser Toolkit for High-Quality Serious Illness Care

Tools for employers and other stakeholders to specify required benefits and network competencies. Catalyst for Payment Reform and Center to Advance Palliative Care, 2018.

How States Can Expand Access to Palliative Care

Health Affairs blog identifying state levers to expand palliative care access - and how to get started.

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

Proactive Patient Identification for Health Plans and ACOs: A Guide

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.

Sample Diagnoses Codes to Identify Patients Living with Serious Illness

Population health entities can use this list to proactively identify people with potentially unmet palliative care needs.

Promising Referral Processes

Compilation from the California Health Care Foundation on challenges and solutions to improve referral of Medicaid beneficiaries to palliative care services.

Home-based Palliative Care Program Credentialing Recommendations

Recommended capabilities and competencies for payers and policymakers to contract with quality programs.

CAPC Clinical Training Recommendations

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.

Recommended Quality Measures

Measures that can be used by payers and policymakers to ensure quality care for people living with serious illness.

Seven Steps for Building a Community-Based Palliative Care Benefit within Medicaid

Resource from the National Academy for State Policy that describes steps state policymakers can take to develop a specialized community palliative care benefit.

Guidance from other organizations working at the state level to improve care for people with serious illness.

National Academy of State Health Policy (NASHP) Resource Hub: State Strategies to Address Palliative Care

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).

American Cancer Society Cancer Action Network (ACS CAN) Palliative Care Resources

Tools to promote policies that improve cancer care, including an annual report tracking individual state progress on adopting model palliative care legislation and other legislative priorities.

California Health Care Foundation (CHCF) Serious Illness & End-of-Life Care Topic Page

CHCF policy initiatives and programming to increase access to palliative care in CA.

Bree Collaborative Palliative Care Project

Excellent example of public-private partnership that developed in-depth recommendations to promote palliative care access and quality in Washington.

Recommended policy improvements at the federal level. Includes 28 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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