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 planning, hospice 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.
- 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 Currently 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.
Financial Services and General Government Appropriations Act, 2024
The House Financial Services and General Government Appropriations bill contains Section 820 which overturns the District of Columbia’s Death with Dignity law. The section also prohibits the DC City Council from adopting similar measures in the future. The Senate Appropriations Committee passed their version of the appropriations bill, but that measure did not contain language that would overturn DC’s Death with Dignity law.
Repealing the Assisted Suicide Funding Restriction Act (ASFRA)
The Assisted Suicide Funding Restriction Act (ASFRA) prohibits the use of federal funds to provide or pay for any healthcare item, service or health benefit coverage to cause, or assist the death of any individual.
Based on this broad definition, federal lawmakers interpret ASFRA to prohibit the use of federal funds to pay for medical aid in dying–specifically, any costs related to the end-of-life care option for mentally capable, terminally ill adults of medical aid in dying to peacefully end unbearable suffering. Medical aid in dying is authorized in Washington, D.C. and 10 states: California, Colorado, Hawaii, Maine, Montana (via a state Supreme Court ruling) New Jersey, New Mexico, Oregon, Vermont, and Washington.
Through ASFRA, Congress only bars the use of taxpayer dollars to subsidize or promote medical aid in dying. Specifically, ASFRA prohibits Medicare, Medicaid, military and federal employee health care plans from paying for medical aid in dying, including clinician visits to determine eligibility and the medication itself, which typically have a combined cost of a few thousand dollars.
Patients who rely on federally-funded healthcare are unable to receive medical aid in dying services at any federally-funded facilities. These facilities include the following:
- The Veterans Administration (VA)
- Indian Health Services (IHS)
- Federally Qualified Health Centers
Jurisdictions authorizing medical aid in dying may fund it via the state portion of Medicaid, as California, Hawaii, New Mexico, and Oregon currently do, or patients may pay for it themselves out-of-pocket or via private insurance if their insurance covers it. Some insurance carriers cover medical aid in dying while other ones do not.
Compassionate Care Act
The Compassionate Care Act (CCA) would promote advance care planning and end-of-life care through physician education and public awareness campaigns; the bill would also address hospice Medicare coverage limitations and develop strategies for implementing advance care planning national policies. The CCA will help to ensure that patients’ wishes are followed throughout their life, particularly during a pandemic that has robbed patients of making critical life or death decisions for themselves
Do No Harm Act (HR 2725, S 1206)
The Do No Harm Act prohibits the application of the Religious Freedom Restoration Act of 1993 (RFRA) to specified federal laws or the implementation of such laws. The bill prevents RFRA from being used to deny (1) goods or services the government has contracted, granted, or made an agreement to provide to a beneficiary; or (2) a person's full and equal enjoyment of a government-provided good, service, benefit, facility, privilege, advantage, or accommodation.
The legislation would protect individual access to, information about, referrals for, provision of, or coverage for, health care items or services (such as end of life care), which is necessary at the end of life.
Palliative Care and Hospice Education and Training Act (S 2243)
The Palliative Care and Hospice Education and Training Act (PCHETA) would amend the Public Health Service Act to increase the number of faculty at accredited Palliative Care Schools to help facilitate more education of health care professionals. The increased education of future health care professionals will better prepare them to deal with end-of-life scenarios. Secondly, the bill would promote increased education and research in Palliative Care and Hospice care. This includes continuing education for current health care professionals to be better prepared.
CONNECT for Health Act of 2023 (HR 4189, S 2016)
The CONNECT for health Act expands coverage of telehealth services through Medicare, makes permanent telehealth flexibilities that were enacted during COVID, makes it easier for patients to connect with their doctors, and helps improve health outcomes. It would permanently remove all geographic restrictions on telehealth services and expand originating sites to include the home and other sites; permanently allow health centers and rural health clinics to provide telehealth services; allow more eligible health care professionals to utilize telehealth services; remove unnecessary in-person visit requirement for telemental health services; allow for the waiver of telehealth restrictions during public health emergencies; and require more published data to learn more about how telehealth is being used, impacts of quality of care, and how it can be improved to support patients and health care providers.
Improved Access to Advanced Care Planning Act
The Improved Access to Advanced Care Planning Act would codify Medicare coverage of advance care planning (ACP) services. It would expand eligible providers that can bill for such services to include clinical social workers with experience in care planning. It would also remove beneficiary coinsurance and deductibles for ACP visits – including those that happen outside of an annual Medicare Annual Wellness Visit – to ensure that beneficiaries are not deterred from seeking these services, and providers are not deterred from offering them. The bill would also require two reports: one that directs the Centers for Medicare and Medicaid Services (CMS) to educate providers on the ACP codes and report to Congress on such activities, and one that directs the Medicare Payment Advisory Commission (MedPAC) to study and report to Congress on (A) barriers to providing and receiving ACP services despite the ability to bill for them, and (B) barriers to billing the code itself.
Health Equity and Accountability Act
The Health Equity and Accountability Act seeks to reform our health system to ensure that historically marginalized communities and communities who face health disparities receive the health services they need to thrive. The provisions within this bill will close health disparities and improve health and wellbeing of communities across the United States. This legislation reforms policies and expands federal health care resources for racial and ethnic minorities, as well as other underserved populations who face discrimination and barriers to care due to their immigration status, sex, age, ability, sexual orientation, gender identity, and English proficiency. Compassion & Choices worked to include end-of-life care in the bill.
VA Clinician Appreciation, Recruitment, Education, Expansion, and Retention Support (CAREERS) Act of 2023 (S 10)
The VA Clinician Appreciation, Recruitment, Education, Expansion, and Retention Support (CAREERS) Act improves the hiring, training, and retention of VA health care personnel, including those who serve older veterans and those at the end of life.
The bill expands training in rural areas and improve access for veterans; Continues professional education for clinical staff who provide care for veterans with Alzheimer’s disease and dementia; and Expands geriatric and palliative specialty services to relieve patient suffering and provide the best possible quality of life for patients and their families at any time during the progression of a serious disease.
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
Compassion & Choices participates in the following coalitions:
The Leadership Conference on Civil and Human Rights is a coalition charged by its diverse membership of more than 200 national organizations to promote and protect the civil and human rights of all persons in the United States. Through advocacy and outreach to targeted constituencies, The Leadership Conference works toward the goal of a more open and just society – an America as good as its ideals. Among the 200+ conference members are American Civil Liberties Union (ACLU), Human Rights Campaign and the National Black Justice Coalition.
Leadership Council of Aging Organizations is a large coalition of national nonprofit organizations serving older Americans. The diverse member association;is dedicated to preserving and strengthening the well-being of America’s older population. They provide a voice for seniors and their families in the ongoing national debate on aging policy. Council members include AARP, American Public Health Association, Jewish Federations of North America, National Association for Home Care & Hospice, and the AFL-CIO.
National Coalition on Mental Health & Aging is comprised of over 80 members representing professional, consumer and government organizations with expertise in mental health and aging issues. Its goal is to work together toward improving the availability and quality of mental health preventive and treatment services to older Americans and their families. Coalition members include the American Psychiatric Association, American Psychological Association, Leading Age, and National Association of Social Workers.
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.