Federal Advocacy & Policy

Bringing the voices of the terminally ill to Capitol Hill.

Compassion & Choices works in the halls of Congress and federal agencies, calling on policymakers to improve end-of-life care by supporting legislation and regulation that allows people to be the primary deciders in their end-of-life care. We envision a patient-directed system that honors and respects patients’ values, priorities and spiritual beliefs and sees those touchstones as the hallmark of patient-directed care. We are advancing federal legislation and regulatory change focused on:

  • Strengthening and expanding the full spectrum of end-of-life care such as advance care planninghospice care, and palliative care, while protecting end-of-life options and patient autonomy from federal efforts to weaken or overturn federal and state laws.
  • Addressing disparities in end-of-life care for historically disadvantaged populations and advancing healthcare equity at life’s end.
  • Expanding professional end-of-life care education, training and development for all healthcare professionals.
  • Preventing healthcare entities from disregarding patient values and preferences by refusing care due to their ethical directives and policy-based restrictions.

Federal Policy Summit on Inequities in End-of-Life Care

Inequities in end-of-life healthcare are systemic and persistent for racially and ethnically diverse communities, LGBTQ+ communities, and those with disabilities. Change requires the collective voices and work of many people, organizations, policymakers, health systems and others — we are committed to this work.

Armed with data from our environmental scan, Compassion & Choices convened its first annual summit in November, 2021: Addressing Inequities in End-of-Life Planning and Care: Advancing Equity at Life’s End.

Fourteen medical, policy and social service experts from across the country along with our partner organizations joined with Compassion & Choices.

Icons of our various partner organizations.

Together, we:

  • reviewed the latest research on disparities in end-of-life planning and care;
  • discussed current challenges and potential solutions; and
  • established shared conclusions, and
  • developed national policy recommendations

The culmination of that work was presented in a summit report that includes a comprehensive review of potential actions that can be taken to address inequities in end-of-life care and planning. Compassion & Choices and our coalition partners are now:

  • working to create a federal policy agenda to address these inequities
  • Incorporating these provisions into existing legislation
  • generating public and media awareness about these inequities and
  • translating the summit report into Spanish, a contribution that is being led by NCOA

Bills We're Tracking

Compassion & Choices advocates for federal legislation that seeks to improve quality end-of-life care and planning and to address inequities in access and care.

Regulatory Actions

Compassion & Choices submitted a comment to the DEA’s proposed rule advocating for an exemption for telemedicine services for people at the end of life. We also encouraged supporters and healthcare providers to let the DEA know that the proposed rule would lead to greater suffering for people at the end of life.Read more here.

Compassion & Choices submitted comments to the U.S. Department of Health and Human Services applauding their partial rescission of the “Protecting Statutory Conscience Rights In Health Care (83 FR 3880)” rule and advocating for further protections for patients’ rights to transparency about refusals of care. Healthcare systems and healthcare providers already have strong protections to refuse to provide end-of-life care options based on religious- or conscience-based reasons. These refusals of care can lead to patients not being able to access end-of-life care that aligns with their values. Patients need to know where they can receive end-of-life healthcare and what to do when healthcare providers deny them the full spectrum of authorized end-of-life options.

  • Seeking to permanently vacate the proposed rule, “Protecting Statutory Conscience Rights In Health Care (83 FR 3880),” from the U.S. Department of Health and Human Services, which attempted to allow medical providers expanded exemptions from critical healthcare services beyond what the law currently allows. Compassion & Choices garnered signatures for its sign-on letter from 50 organizations who share our concerns.
  • Reverse the waiver of the Patient Self-Determination Act, which requires hospitals to inform patients about their advance directive policies and the patient’s right to refuse treatment. Compassion & Choices delivered a letter to Congress and a letter to the U.S. Department of Health & Human Services’ Secretary Alex Azar, respectively, strongly urging the rescission of this waiver. Further, Compassion & Choices prepared a sign-on letter joined by 12 national organizations and 5,000 individuals urging rescission of the waiver.
  • Establish Comprehensive Telehealth Reform. Compassion & Choices signed on with 336 diverse organizations to urge Congressional leaders to facilitate permanent telehealth reform through:
    • Authorization of the continuation of all current telehealth waivers through Dec 2024.
    • Require HHS complete evaluations related to telehealth by Fall 2023 to create recommendations that inform permanent telehealth legislation
    • Take up permanent, evidence-based telehealth legislation for implementation in 2024

Coalitions

Compassion & Choices participates in the following coalitions:

Compassion & Choices Is Working on Federal Bill Introduction to Address Health Inequalities with Like-Minded Groups

The Health Equity and Accountability Act (HEAA) is the only comprehensive, broadly-supported legislation that holistically addresses health inequalities, their intersections with immigration status, age, disability, sex, gender, sexual orientation, gender identity and expression, language, and socio-economic status, along with obstacles associated with historical and contemporary injustices. 

Introduced every Congress for two decades, most recently in 2021-2022, the HEAA has inspired or directly contributed to successful healthcare legislation, including the Affordable Care Act, which it now builds upon. We expect the bill will be reintroduced in September 2023.

Compassion & Choices is part of the Health Equity and Accountability Act Group, a new coalition including the Congressional Black Caucus, Congressional Caucus Hispanic and Congressional Asian and Pacific American Caucus, and other outside stakeholders that provided input for various provisions in the bill. Compassion & Choices has successfully advocated for several end-of-life care improvements to the bill. This year, our advocacy seeks to ensure these improvements remain in this year’s version of the bill (but it would be premature to specify them now until the bill is introduced) as well as play an active role in bringing attention to healthcare disparities at the end of life in the promotion of the bill.

Compassion & Choices
8156 S Wadsworth Blvd #E-162
Littleton, CO 80128

Mail contributions directly to:
Compassion & Choices Gift Processing Center
PO Box 485
Etna, NH 03750

VICTORY: Colorado Gov. Jared Polis signed the improved End-of-Life Options Act.

X