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
Legislation We Support
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.
Compassion & Choices Supports Passage of the VA Clinician Appreciation, Recruitment, Education, Expansion, and Retention Support (CAREERS) Act of 7 2023 (S. 10, Introduced January 23, 20223)
Why It Matters:
Ensures veterans at the end of life have access to quality, responsive healthcare. Geriatrics and end-of-life care provider shortages are particularly challenging for veterans in rural areas.
The bill would:
- Expand training in rural areas and improve access for veterans.
- Continue professional education for clinical staff who provide care for veterans with Alzheimer’s disease and dementia.
- Expand 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.
Improving Access to Advance Care Planning Act (S.4873-introduced 9/15/2022)
Expands individuals’ access to critical advance care planning services, supporting people, including those at the end of life, to plan for their care and ensure healthcare providers honor their decisions when it matters most.
Why It Matters:
Disparities in end-of-life care planning persist for many underserved communities. Few people complete advance care planning, the processes that support adults at any age or stage of health in understanding and sharing their personal values, life goals and preferences regarding future medical care. Individuals and their loved ones need clear and simplified education about all of the advance care planning tools — from wills and trusts to advance directives, physician orders for life sustaining treatment, do not resuscitate orders, and other legal documents — defining an individual’s decisions about end-of-life care and medical interventions.
The Improving Access to Advance Care Planning Act
- Expands access by allowing social workers to provide advance care planning services to individuals
- Removes beneficiary co-pays and cost-sharing for advance care planning outside of annual wellness visits
- Promotes increased education for providers about current advance care planning billing codes
- Improves reporting on barriers to providing advance care planning services and billing the corresponding codes.
Compassionate Care Act (awaiting introduction)
Promotes culturally responsive advance care planning and end-of-life care through physician education and public awareness campaigns; addresses hospice Medicare coverage limitations; and develops strategies for implementing advance care planning national policies.
Why it matters:
We live in a highly fragmented healthcare system, where clinicians providing medical care often have no knowledge or ability to access a patient’s advance directive. As a result, clinicians are put into the unfathomable position of having to make life-altering end-of-life care decisions without knowing the patient’s preference. The Compassionate Care Act addresses these challenges head on by:
- Calling for national advance care planning guidelines;
- Developing methods for properly educating providers; and
- Studying how to improve the usability and portability of, and compliance with, advance directives.
This bipartisan law helps ensure more Americans, particularly those most medically vulnerable, have access to quality healthcare, without having to spend their final days and months burdened by countless unnecessary doctors appointments or even worse, unable to access care at all. Read about our collaborative work with other organizations to secure key telehealth visions of the CARES Act in 2020.
Do No Harm Act (introduced 2023)
Prohibits the Religious Freedom Restoration Act of 1993 (RFRA) from being used to deny patients access to healthcare services, information, referrals and other government-funded goods or services. It would amend RFRA to restore the legislation's original intent by specifically exempting areas of law where RFRA has been used to impose specific religious views on patients.
Why it matters:
Many healthcare entities and organizations have worked to distort RFRA into a blank check to discriminate or to impose their religious beliefs on others. The bill would ensure that religious freedom is used to protect the Constitutional right to free exercise of religion and not to discriminate against patients. The legislation would protect individual access to, information about, referrals for, provision of, or coverage for, health care items or services.
This bill is an important step to addressing critical gaps in palliative care to ensure that all Americans living with a terminal illness can get the care they deserve. Increased palliative medicine training and education, from medical school students to seasoned professionals. We are hopeful the US House of Representatives will follow the US Senate’s lead and introduce this legislation on a bi-partisan basis. Please read our official endorsement letter here.
Why it matters:
- This bill would amend the Public Health Service Act to increase the number of faculty at accredited healthcare programs.
- The bill would promote increased education and research in Palliative Care and Hospice care.
The Federal Team will continue to monitor the bill and be working to add co-sponsors and supporters.
Removing Barriers to Person and Family-Centered Care Act (awaiting introduction)
Establishes a program that allows entities to implement alternative payment models for Medicare and/or Medicaid beneficiaries who have advanced chronic conditions (e.g., late-stage cancer) and have demonstrated cognitive or functional limitations.
Why it matters
This new program would promote better coordination between healthcare providers, placing greater emphasis on individual patient needs. It would:
- Allow Medicare patients to receive palliative care and curative treatment at the same time.
- Allow patients to receive Medicare coverage in a skilled nursing home without a consecutive three-day inpatient hospital stay.
- Allow Medicare patients to receive home health services without the requirement that they be homebound.
- Allow nurse practitioners to sign home health and hospice care plans and certify patients for the hospice benefit.
Compassion & Choices provided provisions that seek to address inequities in end-of-life care for potential inclusion in the legislation.
Legislation We Strongly Oppose
We continue to fight federal legislation that seeks to prohibit or restrict medical aid in dying, including:
Assisted Suicide Funding Restrictions Act (ASFRA) (seeking repeal)
Prohibits the use of federal funds to provide or pay for any healthcare item or service or health benefit coverage for the purpose of causing, or assisting to cause, the death of any individual.
Why it matters
The Act denies patients in ten states and Washington, DC (22% of total U.S. adults) access to medical aid in dying if they cannot afford to pay for access on their own. Specifically, the Act:
- Wrongly suggests that assisted suicide is the same thing as medical aid in dying.
- Disproportionately harms Veterans, those who are less economically advantaged and historically underserved populations.
- Denies informed access to all available healthcare options at the end of life, including advanced directives, hospice care, pain management, palliative care, refusing unwanted medical treatment, palliative sedation and medical aid in dying.
Expresses the sense of Congress that medical aid in dying puts everyone, including the most vulnerable, at risk of deadly harm. This is a non-binding resolution that has no weight of law.
Why it matters
Compassion & Choices opposes legislation hindering patient access to medical aid in dying, a compassionate end-of-life care option. This legislation ignores decades of data showing the positive impacts of medical aid in dying legislation and implies that medical aid in dying causes harm, even when hospice and palliative care do not meet patient end-of-life care needs. While concerning, support for the resolution has dropped each time it has been reintroduced and it offers the opportunity to educate Members of Congress and their staff on medical aid in dying and ensure they have the correct information.
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.