Compassion & Choices

Care and Choice at the End of Life

Portland, OR   |  www.compassionandchoices.org

Mission

Compassion & Choices improves care, expands options, and empowers everyone to chart their end-of-life journey.

Ruling year info

2005

President & Chief Executive Officer

Ms. Kimberly Callinan

Main address

101 SW Madison St #8009

Portland, OR 97207 USA

Show more contact info

Formerly known as

The Hemlock Foundation for End-of-Life Choices

The Hemlock Foundation

EIN

84-1328829

NTEE code info

Human Services - Multipurpose and Other N.E.C. (P99)

Right to Die, Euthanasia Issues (R67)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Compassion & Choices believes in a society that affirms life and accepts the inevitability of death, embraces expanded options for compassionate dying, and empowers everyone to choose end-of-life care that reflects their values, priorities, and beliefs.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Empowering People to Finish Strong

Navigating the healthcare system can be daunting. Considering and discussing our own mortality is difficult for most. But both are crucial to ensuring we live as we wish during the final chapter of our lives and die in as much comfort as possible. Adding to that, 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. COVID-19 exposed this devastating and pervasive problem. Through our online Plan Your Care Resource Center, we provide tools to finish strong, such as the End of Life Decisions Guide & Toolkit and the Dementia Values & Priorities Tool, to help people communicate clearly with providers, take charge of their healthcare and achieve a peaceful death. We also employ an End-of-Life Consultant Program of trained staff that allows people to seek supportive, nonjudgmental information on the full range of options available to the terminally ill.

Population(s) Served

Compassion & Choices is leading the effort to transform how people with dementia die, encouraging people to plan for end-of-life care with dementia before a diagnosis, or at the early stages before thinking and speaking abilities fail. We are educating and advocating for people to document in advance their preferences for care in the event they face dementia by creating a clear-cut set of care instructions for each stage of dementia, called a Dementia Healthcare Directive. The Directive gives loved ones the ability to make informed decisions on the patient’s behalf, leaving people empowered to live their final years on their own terms.

Population(s) Served

Compassion & Choices is seeking to reduce disparities in end-of-life planning and care, and ensure all individuals have access to equitable end-of-life care regardless of gender identity, age, sexuality, race, ethnicity, religion, national origin, wealth, marital status or disability. With guidance from our African American and Latino Advisory Councils, we are engaging communities of color authentically and building programs to address systemic barriers that have resulted in lower rates of hospice use, advance care planning, and effective pain management at the end of life among people of color, as compared with their white counterparts.

Population(s) Served

Our goal is for half of the U.S. population to live where medical aid in dying is an open and accessible medical practice by 2023. Beginning with Oregon’s Death With Dignity Act in 1994, Compassion & Choices has been instrumental in the passage of medical aid-in-dying laws across the nation. These laws allow mentally capable, terminally ill adults the ability to receive medication from their doctor to die peacefully if they choose.
Once medical aid in dying is authorized in new states, we work to ensure that the practice is truly accessible. Protected healthcare options have little value if those who need them don’t know about them, don’t understand them or can’t access them. A medical aid in dying law is meaningless if a patient can’t find a doctor who will write an aid-in-dying prescription or a pharmacist who will fill it. We address this reality as soon as laws are implemented. We launch public and provider education campaigns to raise awareness of legal requirements, persuade health systems to adopt supportive policies, and recruit physicians to support their patients’ dying wishes.

Population(s) Served
Adults
Adults
Adults
Adults

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of volunteers

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Using our comprehensive training and resources, volunteers in all 50 states and the District of Columbia push forward the movement and raise awareness about end-of-life issues.

Number of Facebook followers

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Facebook is our most used social media tool to grow our audience, share updates on the movement, and live stream special events.

Number of people on the organization's email list

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Email is a key tool to expand our reach & drive more gifts. In 2019 we migrated to a new system & performed extensive data hygiene in order to maximize our tech investment, resulting in a decrease.

Number of jurisdictions that have authorized medical aid in dying

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

More than a dozen studies have carefully examined existing laws concluding it benefits terminally ill adults, whether they use the option or not, because it spurs conversations & reduces suffering.

Number of end-of-life planning educational resources disseminated within underserved communities

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Compassion & Choices seeks to raise awareness among underserved communities and reduce disparities in end-of-life planning and care.

Number of events hosted or joined within African American, Latino, LGBTQ, Disability and Faith communities

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

With guidance from our African American and Latino Leadership Councils, our public education campaign is designed to help communities of color claim their voices and agency in end-of-life care.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Compassion & Choices is leading the way in transforming our “one-size-fits-all” healthcare system, which allows too much needless pain and suffering, into one that puts people in charge of their own end-of-life care. We envision a patient-driven system that honors an individual’s values, religious views and spiritual beliefs. We are working toward an America that respects everyone’s right to make their own end-of-life care decisions, in consultation with doctors and loved ones. We advocate for expanded options to ensure everyone can die peacefully and with dignity.

Compassion & Choices works across the nation in communities, state legislatures, Congress, courts and medical settings to:
- Educate the public about the importance of documenting end-of-life values and priorities and about the full range of available options.
- Empower every individual with achievable options, authoritative information and constructive advice for guiding their care and engaging with their providers.
- Advocate for expanded choices, secure and ready access to them and improved medical practice that puts patients first and values quality of life in treatment plans for terminal illness.
- Defend existing end-of-life options from efforts to restrict access.

Our roadmap to success centers on three long-term objectives within our Strategic Plan to achieve our mission to advance end-of-life choice and care:
- We have set the bold intention that by 2028, half the U.S. population will live in a location where medical aid in dying is an open and accessible medical practice.
- We seek to ensure that more patients can access the care they want — nothing more and nothing less. Our programming includes two key focus areas: 1) closing the disparities in end-of-life care and planning for communities of color and authorizing legislation to advance equity in end-of-life care; and 2) transforming how people with dementia die.
- We continue to grow a diverse, equitable and inclusive movement in the areas of race, religion, party affiliation, sexual orientation, gender identity and age, so that people of all demographic groups approach life’s end equipped with information and encouraged to claim their voice.

Compassion & Choices employs a multi-pronged approach, with interconnected strategies that maximize our staff resources, maintain consistent messaging, and leverage voices within communities. Our work centers on:

- Advancing federal and state policy agendas. Compassion & Choices’ policy agenda works to modernize and advance equitable, high quality end of life care that is patient-directed and -centered. We are advocating for essential end-of-life care options, including medical aid in dying, for seriously and terminally ill individuals while deepening relationships with legislators and stakeholders by providing strategic recommendations to increase patient-directed care across the country.
- Grassroots advocacy. Compassion & Choices is leveraging innovative and digital technology to grow our supporter base and amplify the voices of supporters in every corner of the state. We are recruiting, training and mobilizing volunteers who call, email and meet with lawmakers to educate them about end-of-life care options, including medical aid in dying, and demonstrate local support.
- Building Connections. Compassion & Choices staff and supporters attend hundreds of events every year to advocate and educate the public about our end-of-life resources and tools. We use these as an opportunity to listen to and learn from communities; educate people; engage with influential voices; and disseminate important end-of-life resources. Our efforts have gained support from several leading national organizations through endorsements and resolutions.
- Building Collaborations and Partnerships. Compassion & Choices leadership councils represent diverse groups of executives, community leaders, faith leaders and experts in the fields of medicine, estate planning and more. They meet regularly and work tirelessly to advance the mission of expanding options and improving care at the end of life in their communities. Our efforts have gained support from several leading national organizations through endorsements and resolutions.

As the nation’s oldest, largest and most active nonprofit organization committed to improving care, expanding options and empowering everyone to chart their end-of-life journey, Compassion & Choices draws on nearly 25 years of experience and the expertise of staff with a wide variety of legal, healthcare and communications backgrounds. We have over 80 staff in our Washington, DC, and Portland, Oregon, offices and across the country with extensive public health, policy, legal and legislative experience. Through their advocacy, education, and outreach, our staff are national leaders in creatively and effectively promoting improved end-of-life planning and care for seriously ill and dying patients.

Compassion & Choices is the leading nonprofit organization working to improve care and expand choice at the end of life. Since 1980, 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. Our accomplishments include legitimizing palliative sedation as a medical practice; establishing that undertreatment of pain is a form of elder abuse; and playing a leadership role to secure, protect and implement medical aid in dying across most of the authorized jurisdictions.

What sets us apart is the depth and breadth of our tools and programs and the smart, innovative strategies we deploy to bring autonomy and control to the individual. We are experts in finding the appropriate balance between advancing a broad issue agenda to secure and protect end-of-life rights, and carefully identifying the activities that will have the biggest, quickest impact given the urgent needs of dying patients and current political realities. We seek to focus on the “game changers” that will create systemic transformation.

In recent years, our most robust and successful program has been advancing, protecting and implementing medical aid in dying. Over the past seven years, we have more than doubled the number of states authorizing the medical practice and quadrupled the number of people with access to this cherished option. In this period:
- Seven jurisdictions authorized medical aid in dying: California, Colorado, Hawai’i, Maine, New Jersey, New Mexico and Washington, D.C.;
- 21 medical societies dropped their opposition; and
- A dozen national Latino and African American leaders and organizations endorsed end-of-life autonomy.
Compassion & Choices has earned its seat at the table with top policymakers and healthcare providers. We forge alliances and partnerships with influential medical organizations that lend us credibility and expertise, including the Leadership Council of Aging Organizations; the American Academy of Hospice and Palliative Medicine; and the American Public Health Association.

For more than 40 years, by using a comprehensive strategy including legislative advocacy, grassroots organizing, media outreach & litigation, Compassion & Choices, our affiliates, and our predecessor organizations have led most of the significant advances in the movement to expand and improve end-of-life-options & care. Below is a sampling of our notable achievements.

Advance Care Planning and End-of-Life Support
Developed the first national end-of-life consultancy program in 1993, which offers patients & their families tools, information & emotional support on the full range of available end-of-life options.
Launched Finish Strong Tools to empower patients with life-threatening diseases, including dementia, to get the care that reflects their goals, priorities and values.
Pioneered the use of & transformed advance directives from strictly legal documents to a values-based approach for communicating end-of-life priorities.
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.
Established the undertreatment of pain as a form of elder abuse & that caregivers must manage patients’ pain.
Enacted requirements that healthcare providers share information on end-of-life options.

Medical Aid in Dying
Compassion & Choices President Emerita/Senior Adviser Barbara Coombs Lee co-authored Oregon’s landmark Death With Dignity Act, which went into effect in 1997.
Pioneered the medical model of aid in dying that helps ensure that doctors can ethically practice aid in dying in an open, legitimate & accessible way, & integrates the option into patients’ end-of-life care.
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.”
Compassion & Choices is dedicated to the authorization, implementation & protection of expanded end-of-life options. Medical aid in dying is authorized in 11 jurisdictions.

Our roadmap to success centers on three long-term objectives within our Strategic Plan to achieve our mission to advance end-of-life choice & care:
We have set the bold intention that by 2028, half the U.S. population will live in a location where medical aid in dying is an open & accessible medical practice.
We seek to ensure that more patients can access the care they want — nothing more & nothing less.
We continue to grow a diverse, equitable and inclusive movement in the areas of race, religion, party affiliation, sexual orientation, gender identity and age, so that people of all demographic groups approach life’s end equipped with information and encouraged to claim their voice.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    Compassion & Choices serves the general population within the United States. Specifically, we engage with people who are interested in learning about end-of-life care options and how to integrate advance care planning to ensure people’s end of journey aligns with their values, priorities and beliefs. We work across the nation in communities, state legislatures, Congress, courts and medical settings to educate the public about the full range of available options, empower individuals with authoritative information , advocate for secure and ready access to end-of-life options, and defend existing end-of-life options from efforts to restrict access.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    Feedback from the people we serve lies at the heart of everything we do. For example, our latest online tools, the Dementia Values and Priorities Tool and the Dementia Decoder, were designed and built with significant input from the general population, people impacted by a dementia diagnosis and healthcare professionals. This included focus groups, advisory council meetings, and one-on-one conversations. At the programmatic level within communities across the country, we proactively collaborate with local healthcare providers and healthcare consumers to ensure we design campaigns that will authorize and implement medical aid-in-dying laws while supporting their ability to advance legislation and then access the law.

  • With whom is the organization sharing feedback?

    Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    We made a significant investment in obtaining feedback and data from the people we serve, their influencers, and experts in the field, when it came time to update our strategic plan. We formed a strategic impact committee, tapped into our African American and Latino Leadership Councils, conducted a listening tour, and administered two surveys of the network. The final plan was a data driven vision for advancing end-of-life care and choice grounded in goals, strategic objectives and measurable outcomes.

  • Which of the following feedback practices does your organization routinely carry out?

    We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback,

  • What challenges does the organization face when collecting feedback?

    It can be difficult to collect data given the technological challenges of the populations we serve.,

Financials

Compassion & Choices
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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Compassion & Choices

Board of directors
as of 4/21/2021
SOURCE: Self-reported by organization
Board chair

David Cook

No affiliation

Term: 2017 -

Elaine Charney

No affiliation

Steve Hut

No affiliation

Debbi Gibbs

No affiliation

Madison Shockley

No affiliation

Nancy Hoyt

No affiliation

Dan Grossman

No affiliation

Chandana Banerjee

No affiliation

Csaba Mera

No affiliation

Lucille Ridgill

No affiliation

Leslie Rowley

No affiliation

Samantha Sandler

No affiliation

Jerri Shaw

No affiliation

Mark Weideman

No affiliation

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 03/30/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 04/01/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.