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:
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.
Together, we:
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:
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.
Rep. Brittany Pettersen (D-CO) introduced HR 8137, the Patient Access to End of Life Care Act, which would exempt current and future states and jurisdictions that authorized Medical Aid in Dying laws from the restrictions described in the Assisted Suicide Funding Restriction Act of 1997
Currently, 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:
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.
Senator Richard Blumenthal (D-CT) and Representative Nanette Barragán (D-CA) introduced the Compassionate Care Act in both bodies on August 1, 2024. The Compassionate Care Act (CCA) promotes 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.
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.
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.
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.
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.
The Health Equity and Accountability Act was recently introduced by Representative Barbara Lee (D-CA) and Senator Mazie Hirono (D-HI) in their respective House and Senate chambers. The bills seek to ensure communities who face health inequities receive the health services they need. Compassion & Choices successfully advocated for the bill sponsor to include end-of-life care.
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.
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, the HEAA has inspired or directly contributed to successful healthcare legislation, including the Affordable Care Act, which it now builds upon. We look forward to continuing to advocate for successful passage of this critical bill.
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.
Compassion & Choices participates in the following coalitions:
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.
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PO Box 485
Etna, NH 03750
