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 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.
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 six states: Oregon (1994, ballot initiative), Washington (2008, ballot initiative), Montana (2009, state Supreme Court decision), Vermont (2013, legislation), California (2015, legislation) and Colorado (2016, ballot initiative).
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.
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.
History of the End-of-Life Choice Movement
A right-to-die bill is introduced in the Florida legislature, arousing extensive debate, but ultimately is unsuccessful.
Hospice, Inc. was founded in the United States.
The Hemlock Society, an end-of-life care organization for those suffering with incurable illnesses, forms. It later evolves into End-of-Life Choices, which in 2005 merges with Compassion in Dying to form Compassion & Choices, the largest organization in the United States advocating for people’s rights at the end of life.
The U.S. Supreme Court rules in Cruzan v. Director, Missouri Department of Health, affirming the right of Americans to refuse unwanted medical treatment and their right to appoint a healthcare proxy to speak for them when they cannot.1
Compassion in Dying develops and files two federal lawsuits — Glucksberg v. Washington and Quill v. NY — asserting that a mentally capable, terminally ill patient has a right protected by the U.S. Constitution’s guarantees of liberty, privacy and equal protection to choose aid in dying. The Federal District Court for the Western District of Washington rules that this right exists. The state of Washington appeals the decision to the Ninth Circuit Court of Appeals.
Compassion & Choices is the leading nonprofit organization working to improve care and expand choice at the end-of-life. For more than 30 years we have worked to change attitudes, practices and policies so that everyone can access the information and options they need to have more control and comfort at the end of life.
Oregon voters approve the Oregon Death With Dignity Act, a ballot initiative that permits terminally ill patients, under specified standards, to obtain a physician’s prescription to shorten the dying process in a humane and dignified manner. The measure passes with 51 percent of the vote.4
The Ninth Circuit Court of Appeals (in Glucksberg v. Washington) and the Second Circuit Court of Appeals (in Quill v. NY) both decide that the U.S. Constitution protects the choice of a capable, terminally ill patient to choose aid in dying. The states of New York and Washington appeal the decision in the U.S. Supreme Court.
The National Right-to-Life Committee challenges Oregon’s Death With Dignity Act, stalling implementation until the challenge is dismissed by the Ninth Circuit Court of Appeals. The Oregon legislature puts a measure on the ballot to rescind the law, but it is defeated by 60 percent of the voters. Later that year, Compassion in Dying client “Helen” becomes the first person to use the law to die peacefully.
In Glucksberg v. Washington and Vacco v. Quill, the U.S. Supreme Court declines to find federal constitutional protection for aid in dying and refers the issue to the states. However, the court recognizes a federal constitutional right for dying patients to receive as much pain medication as necessary to obtain relief, even if this advances time of death.
Compassion & Choices represents the Bergman family of California in bringing the nation’s first case to claim that failure to treat pain adequately constitutes elder abuse, winning a $1.5M verdict for patient’s pain and suffering. The case establishes that failure to treat pain adequately can result in significant financial risk to healthcare providers.9
Attorney General John Ashcroft issued a directive in 2001 to prevent the Oregon Death With Dignity Act from being implemented. The state of Oregon sued to stop the directive, joined by a group of terminally ill Oregonians and represented by Compassion & Choices. Federal District Court Judge Robert E. Jones in Oregon v. Ashcroft rules against the Ashcroft directive rebuking the federal government for its attempt to “stifle an ongoing, earnest and profound debate in the various states” concerning aid in dying.
The State of Oregon asks the United States Ninth Circuit Court of Appeals in Oregon v. Ashcroft to affirm the lower court decision, which it does, leaving the Oregon Death With Dignity Act intact.
Medical associations begin to adopt policies that support aid in dying, including The American Women’s Medical Association, the American Public Health Association and The American Medical Students’ Association.
On November 4, Washington voters overwhelmingly approve by ballot measure the Death With Dignity Act by a margin of 59% to 41%. Washington becomes the second state to authorize aid in dying.
In December, Montana District Court Judge Dorothy McCarter holds that the Montana Constitution protects a peaceful death with dignity, making Montana the third state to authorize legal aid in dying.
On December 31, the Montana Supreme Court rules in favor of the landmark case brought by Compassion & Choices (Baxter v. Montana), affirming that it is not against Montana public policy for a physician to provide medical aid in dying to a mentally capable, terminally ill individual.
New York passes the Palliative Care Information Act (PCIA) in August. The law, drafted by Compassion & Choices and modeled after a similar measure in California, requires healthcare workers to provide information and counseling on end-of-life options.
The U.S. Conference of Catholic Bishops (USCCB) issues its first official statement condemning aid in dying. Compassion & Choices responds by holding a press conference on the same day, in the same building, refuting the USCCB’s false claims throughout national media.
Award-winning documentary about Oregon’s Death With Dignity Act, How to Die in Oregon, is released, featuring Compassion & Choices clients.
Compassion & Choices becomes a member in the Leadership Conference on Civil and Human Rights, the nation’s premier coalition promoting and protecting civil and human rights in the United States.
On May 20, Vermont becomes the fourth state to authorize aid in dying and the first in the nation to do so through the legislature.
In December, Compassion & Choices joins with aging-focused organizations, healthcare reform groups and legal experts to launch the Campaign to End Unwanted Medical Treatment.
On January 14, medical aid in dying is authorized in New Mexico due to a lawsuit filed jointly by Compassion & Choices and the American Civil Liberties Union. In her ruling, the presiding judge writes, “This court cannot envision a right more fundamental, more private or more integral to the liberty, safety and happiness of a New Mexican than the right of a competent, terminally ill patient to choose aid in dying.”
Compassion & Choices releases a national poll showing that 25 million people per year experience unwanted medical treatment.
A Pennsylvania judge dismisses all charges against Barbara Mancini, who was arrested for handing her dying father his prescription morphine. The Pennsylvania Attorney General charged Barbara Mancini for assisting the death of her 93-year-old, terminally ill father whom Barbara was caring for while he was on at-home hospice care. Compassion & Choices ignites a nationwide discussion on end- of-life autonomy through its campaign to have the charges dropped.
The Institute of Medicine of The National Academies releases “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life”. Compassion & Choices conducted educational briefings and commissioned policy papers in support of the report’s recommendations.
Brittany Maynard, a terminally ill 29-year-old Californian, releases a video as part of a transformative joint campaign with Compassion & Choices to expand access to medical aid in dying in California and nationwide. The video garners 9 million views in its first three weeks on YouTube, and coverage from every major news outlet catalyzes not only a nationwide conversation on death with dignity but more than two dozen aid-in- dying bills introduced in state legislatures around the country.
Twenty-five state legislatures and the District of Columbia introduce medical aid-in-dying bills.
U.S. Senators Mark Warner (D-VA) and Johnny Isakson (R-GA) introduce the bipartisan Care Planning Act of 2015, which would create a Medicare benefit for people facing grave illness to work with their doctor to document their personal goals for treatment. Compassion & Choices endorsed this legislation.
The California Medical Association drops its 28-year opposition to medical aid in dying by taking a neutral position on the End of Life Option Act.
The New Mexico Court of Appeals issues a decision on Aug 11, 2015, finding that there is no fundamental right to aid in dying in New Mexico, reversing the decision of District Judge Nash’s 2014 ruling.
California becomes the fifth state to authorize medical aid in dying by passing the End of Life Option Act and thereby providing a total of 16% percent of the U.S. population access to the full range of end-of-life care options.
The Centers for Medicare & Medicaid Services issues a rule to reimburse doctors for advance planning and end-of-life conversations after successful advocacy by Compassion & Choices and other aging and healthcare organizations.
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