Compassion & Choices is the nation’s oldest, largest and most active nonprofit organization committed to improving care and expanding choice at the end of life. Across the nation, we work to ensure healthcare providers honor and enable patients’ decisions about their care. To make this vision a reality, Compassion & Choices works nationwide in state legislatures, Congress, courts, medical settings and communities to:
- empower people with information and tools, including our free consultation program, to receive healthcare that is consistent with their values and priorities as they approach the end of life.
- advance policies that allow people to make fully informed decisions about their healthcare, such as improving hospice and palliative care and ending unwanted medical treatment.
- authorize and implement medical aid in dying to allow mentally capable adults in their final weeks or months of a terminal disease to advance the time of death and end unbearable suffering.
It’s our belief — and our experience for the past 30 years — that the path to change starts with the individual, which is why patient-centered care stands at the core of all we do.
Learn more. Read or download About Compassion & Choices, a concise overview of our mission and current areas of work. Learn more about the challenges in end-of-life care facing many Americans by reading End-of-Life Care and Choice: The Looming Crisis of Suffering in the U.S.
Compassion & Choices’ innovative legal advocacy program helps people achieve better medical care and gain equal access to the full range of end-of-life options. Our litigation is widely acknowledged to have brought much-needed attention to end-of-life care and to have established important legal precedents, including a federal constitutional right to aggressive pain management.
Candid conversation is crucial to ensuring we get the care we want at the end of life, and so is reliable information. Our End-of-Life Information Center offers resources on end-of-life options and to help guide these important discussions with loved ones, healthcare providers and others close to us.
We firmly believe — and experience demonstrates — that working within healthcare systems to normalize medical aid in dying will ensure fewer people suffer at the end of their life. Our access program supports hospitals and healthcare systems in states where laws have been passed so that all terminally ill people who are eligible will have access to medical aid in dying.
We advocate for policies that empower people to control their own healthcare decisions. At the state level, we work to pass and then implement aid-in-dying laws so that mentally capable, terminally ill adults have access to all end-of-life options, no matter where they live.
At the federal level, we are driving a robust policy agenda and supporting bipartisan legislation in Congress to improve end-of-life care overall. We are also a founding collaborator on the Campaign to End Unwanted Medical Treatment, an initiative to ensure that patients get the exact treatment they want – nothing more and nothing less – at the end of life.
For more than 30 years, by using a comprehensive strategy including legislative advocacy, grassroots organizing, media outreach and litigation, Compassion & Choices, our affiliates, and our predecessor organizations have led most of the significant advances in the movement to expand end-of-life-options and improve care. This includes:
Advanced Care Planning and End-of-Life Support
- 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. Compassion & Choices is one of the leading providers of advance directives, 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.
Palliative Care and Pain Management
- Legitimized palliative sedation as a recognized medical practice by advancing the court case that recognized that 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 legal end-of-life options.
Aid in Dying
- Compassion & Choices President Barbara Coombs Lee co-authored Oregon’s landmark Death With Dignity Act, which went into effect in 1997. Eighteen years later, it is the model for aid-in-dying legislation nationwide.
- Pioneered the medical model of aid in dying that helps ensure that doctors can ethically practice aid in dying 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.
- Secured authorization and implemented medical aid in dying in seven states: 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).
- 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 three legislative attempts to overturn the law; and have protected the law in Vermont against repeated legislative attempts to repeal or weaken the law.
A short fact sheet, History of the End-of-Life Choice Movement, is available here. While much has been accomplished, Compassion & Choices will continue our work until full end-of-life options are available to all Americans.
Compassion & Choices receives stellar ratings from the nonprofit world’s major charity evaluators. The experts agree that we use your generous contributions effectively. Read more about our ratings.
Charity Navigator’s 4-star rating means Compassion & Choices is “Exceptional: Exceeds industry standards and outperforms most charities in its Cause.” Charity Navigator has given this rating to Compassion & Choices for the fifth time in a row. “Only 5% of the charities we rate have received at least 5 consecutive 4-star evaluations, indicating that Compassion & Choices outperforms most other charities in America. This ‘exceptional’ designation from Charity Navigator differentiates Compassion & Choices from its peers and demonstrates to the public it is worthy of their trust.”
Compassion & Choices is a “GuideStar Gold” participant, which means we demonstrate our commitment to transparency by providing Guidestar with information on our impact and effectiveness. GuideStar does not rate or rank nonprofits.
The BBB Wise Giving Alliance’s accreditation means that Compassion & Choices meets 20 exacting standards for charity accountability in governance and oversight, effectiveness, finances, solicitations and informational materials, and complaints.
Compassion & Choices is included in the organization’s Top-Rated Charities list because we meet CharityWatch’s transparency and governance benchmarks.
GreatNonprofits’ Top Rated
Compassion & Choices is included in the organization’s Top-Rated Charities list because we’ve amassed several stories submitted by people who know us best — our supporters, donors, volunteers, and others– all those who have experienced the impact of our work up close.
The Seven Principles of Person-Centered Care
End-of-life care should focus on the individual’s comfort.
Too often, death is seen as a failure of treatment, not a natural event. Physicians sometimes withdraw from patients who are in the terminal stage of illness or encourage them to continue invasive therapies that can make their final days miserable. This deprives people of the opportunity to enter what is sometimes called “the final stage of growth.”
You are in charge of your own care. Set your priorities in advance.
Individual tolerance for pain and suffering varies dramatically.
Only you can determine whether you are suffering too much. You should receive appropriate, state-of-the-art comfort care in accordance with your needs.
Providers should generously prescribe medication for pain and breathlessness, and give patients control over the dose and frequency of administration.
Symptoms such as hiccoughs, nausea, diarrhea, itching and fatigue can be oppressive and should be taken seriously. Say something if you feel you are being ignored, or empower your healthcare representative to speak on your behalf.
Decisions about end-of-life care begin and end with the individual.
The answer to the question, “Who should decide?” is “YOU.”
Even very ill people usually retain the capacity to make decisions. Loved ones and providers should take care not to usurp that authority when communication becomes difficult.
If you are no longer capable of making decisions, your known wishes (as detailed in your advance directive) still dictate the level of care you receive. Ensure clarity by completing a dementia provision.
4.) PERSONAL VALUES
You have the right to make decisions based on your own deeply held values and beliefs, without fear of moral condemnation or political interference.
Dying patients should not be subject to subtle or overt suggestions that their choices are wrong or immoral. A provider’s beliefs should never supersede the patient’s. Providers who withhold vital information about treatment options must be held accountable. Compassion & Choices advocates for laws and policies that protect your rights.
5.) INFORMED CONSENT
You have the right to comprehensive, candid information to enable you to make valid decisions and give informed consent.
Compassion & Choices encourages you to assess your situation using the following “BRAIN” exercise. Before consenting to procedures and treatment, assess the: Benefits, Risks, Alternatives, Insight into what these mean to you, and consequences of doing Nothing.
Ask the doctor these crucial questions as you consider disease-specific treatment:What is the chance it will prolong my life? By how much?
- What are the side effects?
- How will it affect my quality of life?
- What are the alternatives?
Providers should never withhold information about legal alternatives. Doing so deprives you of the information you need to give informed consent.
You must be empowered to make decisions based on your own assessment of the balance between quantity and quality of life.
You may reject treatment because of unacceptable side effects. Saying “no” to burdensome treatment may improve your quality of life and give you more opportunities to experience joy in the time you have left.
You as the patient have the right to early, forthright and complete notice of institutional or personal policies or beliefs that could impact your end-of-life wishes.
People who are dying often discover too late that the beliefs and values of their healthcare provider limit their personal end-of-life choices.
Health-plan marketing materials and enrollment documents should prominently spell out any such limitations in a clear, forthright manner. Hospitals, clinics, pharmacies, and other healthcare institutions should publicly display information about restrictive policies of a religious or moral nature. Again, you and your representative should verify that your providers will adhere to your wishes.
Barbara Coombs Lee, PA, FNP, JD, President
Kim Callinan, Chief Program Officer
Marcia Campbell, CPA, Chief Financial Officer
Mickey MacIntyre, Chief Strategic Officer
Trish Bernstein, Chief Operating Officer
Ken Mintzer, Chief Development Officer
Kevin Díaz, National Director of Legal Advocacy
Jessica Grennan, National Director of Political Affairs & Advocacy
Dr. David Grube, National Medical Director
Rabia Shirazi, National Director of Communications and Marketing
Kimberly Taccini, National Director, Integrated Program Initiatives
Kat West, JD, National Director of Policy & Programs
Linda Roth Platt, National Director of Development
Our Board of Directors
Nancy Hoyt, Chair
Nancy is a counseling psychologist and educator who has worked with adolescents in underserved Chicago schools. She is currently the vice president of the Civic Leadership Foundation’s board, whose program helps students develop the skills and experiences necessary to become engaged civic leaders. She received her BA from Sarah Lawrence College and her MA in organizational and counseling psychology from Teacher’s College, Columbia University. Nancy has served on many strategic planning committees in both secondary schools and colleges in New York and Chicago. She and her husband, Bob Hoyt, have been involved with Compassion & Choices for more than a decade.
Samantha Sandler, Vice Chair
Samantha’s wide range of interests have found expression in both the for profit and not for profit worlds. She spent many years developing rental housing in New Jersey. She developed an art print business while raising her family in London. She did clinical social work at Mt Sinai Hospital in NYC and Beth Israel in Newark NJ. In the not for profit area she has served on various board supporting disabled young adults in a residential facility, supporting a local YMCA and contributing to the goals of the Nantucket Conservation Foundation. Her interest in Compassion & Choices began initially with a C&C lecture on Living Wills and quickly extended to attending and then sponsoring events to introduce others to the organization.
Claire has done death and dying work for many years, and has run a discussion group on these issues for over a decade, believing that aid and comfort to the dying is a form of social justice. She owns Jacobus Pharmaceutical Company with her husband, David, marketing drugs for tuberculosis and leprosy worldwide. Her past work includes book reviewing and overseeing clinical papers, grants and contracts at Memorial Sloan-Kettering Cancer Center in New York City. An active volunteer in Princeton, NJ, she is especially interested in libraries, schools and social service institutions.
Jaren Ducker, Treasurer
Jaren combines her career in antique jewelry with community service concentrated on civil liberties. She has been board president for Planned Parenthood of the Rocky Mountains and the Denver Public Library Commission, and the ACLU of Colorado’s treasurer. She is currently president of the Denver Convention Center Hotel Authority board. She received the Margaret Sanger Award for exemplary leadership in furthering reproductive rights and the Carl Whitehead Award for lifetime contributions to civil liberties. She earned her BA in economics, cum laude, from Smith College. Jaren has long been committed to end-of-life choice and brings to Compassion & Choices that passion along with her extensive board experience.
David N. Cook, MTh, JD, Secretary
David brings extensive experience in nonprofit governance and organizational finance, as well as expertise in guiding coalitions of diverse stakeholders in pursuit of common legislative and policy initiatives. Formerly General Counsel of the North American Electric Reliability Corporation and Deputy General Counsel of the United States Federal Energy Regulatory Commission, he has practiced law for more than 40 years. David and his wife Ann are longtime supporters of the movement for end-of-life choices. He was elected to the board in 2014.
Betsy Van Dorn, Executive Committee Member at Large, Development Chair
Betsy Van Dorn is a retired writer and founding editor of The Family Education Company, a web-based parent education site. She currently serves on the board of Fenway High School, an internationally recognized pilot school in Boston and volunteers as a docent at Discovering Justice, the James St. Clair Education Project at Boston’s Moakley Federal Courthouse. A graduate of Oberlin College and Boston University School of Education, Betsy worked for Houghton Mifflin Company, Harper and Row, Scott Foresman, Harcourt Brace Jovanovich and Pearson Education.
Nan has had a distinguished career in international public health as well as in child welfare and juvenile justice. From 2007 to 2015, she was the CEO of Action Against Hunger |ACF International, a global leader in saving the lives of severely malnourished children while helping vulnerable communities become self-sufficient, reaching some 7 million people annually. Previously, she served as President/CEO of Helen Keller International and, before that, for 22 years, she was President/ CEO of The Children’s Village, a multi-service agency for troubled youth and their families where she also created the Center for Child Welfare Research. She partially retired in 2015 to write a book on child welfare and pursue other interests. She lives in New York. A lifelong interest in the issue of death with dignity has inspired her work with Compassion & Choices.
Debbi has been actively involved with Compassion & Choices since 2000. Her grandmother spent the last few months of her life distributing copies of Elisabeth Kubler Ross’ book On Death and Dying and preparing for a good death from the effects of cancer. Her mother was active in reproductive rights. Debbi Gibbs is the Director of Just Managing, a music agency, and has worked as an executive director in the broadcasting and entertainment industry for many years. She holds an Architecture degree and lives in New York with her son.
Steve has been as an assistant public defender in Maryland since 2012, defending the indigent criminally accused and serving as general counsel for the office. From 1980 until 2012, he was a litigation partner in the Washington, D.C.-based law firm Wilmer Cutler Pickering Hale and Dorr LLP, where he handled a variety of complex business-litigation cases. He served for 15 years as chair of the firm’s pro bono program, which The American Lawyer consistently ranked among the top five in the country. He was recognized by The Baltimore Sun as its “person of the week” for his work in a case that brought a halt to Maryland’s death penalty. He has also served on a number of nonprofit boards.
Sharon is a senior partner with Southwest Consulting Group in Santa Fe focusing on nonprofit management, program development and fundraising. She is also a certified mediator specializing in family mediation and serves as a legislative assistant to a New Mexico state senator. Sharon has a BA from the University of Missouri-Columbia in recreation therapy. Her interest in Compassion & Choices comes from her passion to help others make end-of-life choices that give them the best death possible. She aspires to take this message to young people with the hope it will inspire them to have a more positive relationship with their own feelings about the cycle of life and death.
Jerri is co-founder and President of JBS International, Inc., a consulting firm that works to strengthen health care, social service, and education systems in the U.S. and internationally. Her career has focused on vulnerable populations, expanding their access to and choices for quality health care. Her work engages policy makers and program leaders in strengthening federal, state, and community health care policy and service delivery.
Barbara Coombs Lee, PA, FNP, JD, President, ex officio
Barbara practiced as a nurse and physician assistant for 25 years before beginning a career in law and health policy. Since then she has devoted her professional life to individual choice and empowerment in health care. Barbara’s professional experience includes work as a private attorney, counsel to the Oregon State Senate, a managed care executive, and President of Compassion In Dying from 1996-2004. Barbara was Chief Petitioner for the Oregon Death with Dignity Act. She is a champion for enabling individuals with the freedom to consider a complete range of choices and be full participants in their health care decisions. As President of Compassion & Choices, Barbara oversees advocacy, development, legislative and client support. Read Barbara’s full bio here.
Marcia A. Campbell, CPA, Chief Financial Officer, ex officio
Marcia A. Campbell, CPA, is chief financial officer of Compassion & Choices. She has worked since 1978 as an accountant to a wide range of clients, ranging from manufacturers to mortgage brokers. She has earned a reputation as a successful CFO, controller, and human resources director for closely held private companies and nonprofit organizations. The Kansas City, Missouri, native is mother of two adult sons and enjoys painting when she puts down her calculator.
Mickey MacIntyre, Chief Strategic Officer, ex officio
Mickey has built nonprofit civil rights organizations and served as an architect of social change movements for years. In the past decade alone, he provided fundraising and development consultation to over 1,000 organizations including Human Rights Campaign, Disability Funders Network, Black AIDS Institute and the American Red Cross. As chief strategic officer, Mickey integrates core Compassion & Choices services of advocacy, consultation, education and outreach while setting and guiding the strategic direction of the organization.
Our Board of Advisors
Marcia is senior lecturer in the Department of Social Medicine at Harvard Medical School and former editor-in-chief of the New England Journal of Medicine. She is author of the book “Science on Trial: The Clash of Medical Evidence and the Law in the Breast Implant Case.”
Dr. Richard Alpert (Ram Dass) is a ’60s counter-culture icon, author and spiritual teacher. He has authored several books including “Still Here: Embracing Aging, Changing and Dying.”
Nancy Neveloff Dubler, LL.B.
Nancy is director of the Bioethics Division at Albert Einstein College of Medicine in Bronx, N.Y. Her many published works include “Ethics on Call: Taking Charge of Life and Death Choices in Today’s Health Care System.”
Olympia is an Academy Award-Winning actress and activist for issues including human rights, civil rights and the environment. Memorable roles include her Best Supporting Actress Oscar-winning performance in “Moonstruck” and her portrayal of a mother of an AIDS-afflicted man who seeks aid in dying in “The Event”
Dr. Etzioni is one of the most highly regarded public intellectuals. He authored 24 books including The Spirit of Community. He was Professor of Sociology at Columbia University for 20 years and taught at Harvard and Berkeley. He was a guest scholar at the Brookings institute and a Senior Advisor to the White House. He is the first University Professor at The George Washington University, where he is the Director of the Institute for Communitarian Policy Studies. He served as president of the American Sociological Association in 1994-95 and has held many other esteemed positions and won myriad awards for his work.
Bruce is a constitutional and international lawyer and legal scholar. He was associate deputy attorney general under President Reagan and served on the American Bar Association’s Task Force on Presidential Signing Statements in 2006. He is a frequent expert guest for the BBC, CNN, MSNBC and NPR.
Judith has captivated millions of readers worldwide with her novels. Her first effort “Scruples” shot to number one on the New York Times bestseller list. Her most recent work is her memoir “Sex and Shopping: Confessions of a Nice Jewish Girl.”
Betty is an Emmy Award-winning journalist, author and former correspondent for NBC News. She now contributes reports for PBS’ Religion and Ethics Newsweekly. She has written seven books, including her best seller, Last Wish, published in 1985, which deals with the assisted suicide of her terminally ill mother and has led to her long involvement with the aid-in-dying movement.
Rev. Dr. Paul Smith
Smith is a pastor with the First Presbyterian Church in Brooklyn, N.Y. As Board Chairman of the Ethics Committee at Brooklyn’s Long Island College Hospital, he worked with Doctors and Staff to inform and support regarding difficult patient care decisions. Facing Death, Dr. Smith’s recently published book, chronicles ministering intimately to the dying and their loved ones. Currently, Dr. Smith is Executive Director of Healthy Families Brooklyn, a foundation dedicated to the improvement of access to health care in underserved communities.
Rev. John Shelby Spong
Spong is the retired bishop of the Episcopal Diocese of Newark, N.J., and the leading liberal theologian of our time. He has authored several best-selling books challenging the Bible’s teachings on homosexuality, the virgin birth and Christ’s resurrection.
Marilyn is a distinguished professor and co-director of the Journalism Department at Knox College in Galesburg, Ill. Her Pulitzer Prize-nominated book “The Good Death: The New American Search to Reshape the End of Life” chronicles the lives of 15 terminally ill patients and explores the social, legal and moral issues surrounding death in America. She is the former editor-in-chief of Psychology Today and a contributing writer and editor for New York Magazine among other publications.
Rev. Howard Moody
Moody, a self-proclaimed “trustful agnostic” presided over the congregation of Judson Memorial Church in the West Village neighborhood of New York City for 35 years. Moody led a group of peaceful protestors in the March on Washington, helped open a clinic to provide safe, affordable abortions years before Roe v. Wade and created an AIDS task force at Judson.
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