Advance Care Planning and End-of-Life Support
Compassion & Choices is the leading advocate for making important healthcare plans in advance and developing patient-centered end-of-life care tools:
➔ Developed the first national end-of-life consultancy program in 1993, which offers patients and their families tools, information and emotional support on the full range of available end-of-life options. ➔ Pioneered the use of and transformed advance directives from strictly legal documents to a values-based approach for communicating end-of-life priorities. ➔ Developed a dementia provision, and created one of the early and most widely disseminated toolkits to help translate people’s values into care preferences. ➔ Advocated for the successful adoption of a new Centers for Medicare and Medicaid Services rule allowing the agency to reimburse doctors for advance healthcare planning discussions. ➔ Helped secure critical provisions in the Coronavirus Aid, Relief and Economic Security (CARES) Act, including improvements to telehealth laws, ensuring safe and equitable access to care for terminally ill patients without the health risks of in-person visits.
Palliative Care and Pain Management
Compassion & Choices stands at the forefront of championing patient rights and appropriate care at the end-of-life:
➔ Legitimized palliative sedation as a recognized medical practice by advancing the court case that recognized dying patients have a constitutional right to receive as much pain medication as necessary, even if it advances the time of death, in the U.S. Supreme Court decision Vacco v. Quill (1997). ➔ Established the undertreatment of pain as a form of elder abuse and that caregivers must manage patients’ pain in Bergman v. Eden Medical Center (2001). ➔ Increased physician training in palliative care in California. Passed AB 487: Pain Management and the Appropriate Care and Treatment of the Terminally Ill in California in 2001, collaborating with the California Medical Association. The law requires most California-licensed physicians to take, as a one-time requirement, 12 units of continuing medical education on pain management and “the appropriate care and treatment of the terminally ill.” ➔ Enacted requirements that healthcare providers share information on end-of-life options. Compassion & Choices sponsored and helped pass the Palliative Care Information Act in New York (2010) that requires healthcare workers to provide information and counseling on end-of-life options and the Right to Know law in California designed to ensure that patients can receive information about all of their and counseling on end-of-life options and the Right to Know law in California designed to ensure that patients can receive information about all of their legal end-of-life options.
Medical Aid in Dying
Compassion & Choices is the oldest and largest organization in the movement to expand end-of-life-options and improve care at the end of life:
➔ Compassion & Choices President Barbara Coombs Lee co-authored Oregon’s landmark Death With Dignity Act, which went into effect in 1997. Twenty years later, lawmakers continue to look at the Oregon experience and are developing new legislative approaches to medical aid in dying nationwide. ➔ Pioneered the model of medical aid in dying that helps ensure doctors can ethically practice in an open, legitimate and accessible way, and integrates the option into patients’ end-of-life care. The culmination of that work was the publication of clinical criteria in the Journal of Palliative Medicine in December 2015. ➔ Advanced Glucksberg v. Washington (1997) to the U.S. Supreme Court. The landmark ruling encouraged individual states to engage in an “earnest and profound debate about the morality, legality and practicality of” medical aid in dying, setting the stage for the consideration of legislation at the state level. ➔ Medical aid in dying is authorized in ten jurisdictions: Oregon (1994, ballot initiative), Washington (2008, ballot initiative), Montana (2009, state Supreme Court decision), Vermont (2013, legislation), California (2015, legislation), Colorado (2016, ballot initiative), Washington, D.C. (2017, legislation), Hawai’i (2018, legislation), New Jersey (2019, legislation) and Maine (2019, legislation). Compassion & Choices is dedicated to the authorization and implementation of expanded end-of-life options. ➔ Protected the Oregon Death With Dignity Act in court against two challenges, one from the National Right to Life Group and one from the U.S. Attorney General; protected the authorization of medical aid in dying in Montana against five legislative attempts to overturn the law; and have protected the law in Vermont against repeated legislative attempts to repeal or weaken the law. ➔ Within one week of a Riverside County judge’s reckless ruling to invalidate the California End of Life Option Act, we filed a motion with the judge to vacate (cancel) the decision. When he rejected our motion, we immediately filed a notice of appeal with the appelate court on behalf of two terminally ill patients and a doctor. Our actions resulted in the law’s reinstatement — potentially for the duration of the cynical and unpopular lawsuit to repeal the law. ➔ Our successful efforts to exclude the Harris Amendment — designed to overturn and defund the D.C. Death with Dignity Act — from the federal appropriations process included hosting a Capitol Hill briefing and meeting with more than 65 congressional offices from 30 states. ➔ We also rallied supporters to submit comments on proposed federal regulations that would empower a division of the U.S. Department of Health and Human Services to facilitate physicians’ ability to impose religious beliefs on their patients by denying information and access to lawful end-of-life care options. More than 2,400 people acted on our email request to submit comments.