Death with Dignity National Center

Respect the will of the people

Portland, OR   |  https://www.deathwithdignity.org

Mission

The mission of the Death with Dignity National Center is to promote Death with Dignity laws based on our model legislation, the Oregon Death with Dignity Act, both to provide an option for dying individuals and to stimulate nationwide improvements in end-of-life care.

Ruling year info

1995

Executive Director

Ms. Peg Sandeen Ph.D.

Main address

520 SW 6th Avenue Suite 1220

Portland, OR 97204 USA

Show more contact info

EIN

93-1162366

NTEE code info

Education N.E.C. (B99)

Public, Society Benefit - Multipurpose and Other N.E.C. (W99)

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

In the last 50 years, advances in medical technology have fundamentally changed how Americans die. These advances have led to positive outcomes for many individuals, but there are others for whom the extension of their lives through modern medicine has led to a painful and protracted dying process.

Terminally ill individuals seek—and deserve—the freedom to decide how they die. For some, this includes the option of a hastened death as a means to end their suffering and maintain autonomy until their final breath. The Death with Dignity National Center promotes policy reform that makes this option available to mentally capable individuals with six months or less to live. In the process, we strengthen the nationwide movement for greater choice and control at the end of life.

Additionally, we mount legal defense of existing assisted-dying laws at the state and federal levels based on our successful efforts to defend the groundbreaking Oregon Death with Dignity Act.

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?

Public Education

The Death with Dignity National Center is a 501(c)(3) non-profit organization that focuses on public education and legal defense. Death with Dignity provides targeted education to a wide variety of groups who have an interest in death with dignity laws based on Oregon’s landmark Death with Dignity Act, including physicians, lawyers, medical students, elected officials, members of the media, college students, and church officials.

Population(s) Served
People with diseases and illnesses
Adults

Our website, www.deathwithdignity.org, receives over 97,000 visits per year. We respond to over 2,500 phone calls and emails per year from people across the country, providing educational materials and referrals to terminally ill patients and their family members, students, and others interested in death with dignity as a social issue and as an end-of-life option for qualified terminally ill individuals.

Population(s) Served
People with diseases and illnesses
Adults

Through our core program, Dignity50, we promote Death with Dignity laws based on our model legislation, the Oregon Death with Dignity Act, as a stimulus to nationwide improvements in end-of-life care and as an option for dying individuals. We accomplish our mission by working to defend and promote Death with Dignity laws in court and in the court of public opinion.

Through our State Leadership Incubator, we provide educational resources in the form of online trainings and one-on-one consultations to advocates in states that lack Death with Dignity statutes, empowering them to work effectively toward achieving end-of-life care policy reform. We also provide these advocates with seed funding to grow their nascent organizations, allowing them to expand their capacity to effectively educate their communities about, and increase support for, death with dignity in their respective states.

Population(s) Served
People with diseases and illnesses
Adults

Where we work

Accreditations

Better Business Bureau Wise Giving Alliance 2010

Better Business Bureau Wise Giving Alliance 2012

Better Business Bureau Wise Giving Alliance 2014

Better Business Bureau Wise Giving Alliance 2017

Charity Watch 2019

Better Business Bureau Wise Giving Alliance 2019

Affiliations & memberships

Better Business Bureau Wise Giving Alliance - Organization 2010

Better Business Bureau Wise Giving Alliance - Organization 2014

Better Business Bureau Wise Giving Alliance - Organization 2018

Better Business Bureau Wise Giving Alliance - Organization 2019

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 jurisdictions that have adopted death with dignity laws

This metric is no longer tracked.
Totals By Year
Related Program

Dignity50, formerly Oregon Plus One

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Ten jurisdictions have death with dignity laws: Oregon-1997; Washington-2008; Vermont-2013; California-2015; Colorado-2016; Washington, DC-2017; Hawaiʻi-2018; Maine, New Jersey-2019; New Mexico-2021.

Number of grassroots organizations supported

This metric is no longer tracked.
Totals By Year
Related Program

Dignity50, formerly Oregon Plus One

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Through our State Leadership Incubator program, we provide financial and/or strategic support to grassroots groups in: AZ, FL, GA, MA, NC, NM, NV, NY, and OH, and support to folks in NH & VA.

Number of requests for data

This metric is no longer tracked.
Totals By Year
Related Program

Public Education

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Students, medical professionals, the media, terminally ill patients and family members request information from us as a recognized and trusted resource on issues pertaining to end-of-life care.

Number of people on the organization's email list

This metric is no longer tracked.
Totals By Year
Related Program

Communications

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Email is one of our key advocacy and fundraising tools. We have focused on developing an effective email strategy to engage donors, advocates, and volunteers in specific states and nationwide.

Number of Facebook followers

This metric is no longer tracked.
Totals By Year
Related Program

Communications

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

We share news/research related to end-of-life care in the US, partner organizations’ news, personal stories from terminally ill Americans. This helps grow the movement for improved 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.

Death with Dignity National Center works to stimulate changes in end-of-life care by promoting death with dignity policy reform, which provides a dignified and humane option for terminally ill people whose dying process is full of suffering and indignity.

In our decades of work at the local and national levels, we have learned the road to lasting policy change begins not in the halls of power, but at the grassroots. As part of our core program, Dignity50, we provide training, strategic guidance, and critical funding to community leaders on the front lines of the death with dignity movement in states across the country. This coordinated, state-by-state approach catalyzes policy reform in a growing number of states and strengthens the nationwide movement for greater choice and control at the end of life.

We also provide information, education, and support about death with dignity as an end-of-life option to patients, family members, legislators, advocates, healthcare and end-of-life care professionals, media, and the interested public.

In order to act as a leader catalyzing policy reform, we build national-state partnerships with local groups. Through these partnerships, we are able to effectively transfer policy knowledge, research, and analysis to grassroots activists engaged in regional or local work.

For example, in Maine, which adopted a death with dignity statute in 2019, we were the only national organization active during the entire 5+ years of work it took to achieve policy reform. We partnered with a local organization to provide strategic support; raise funds; and educate legislators, residents and interest groups about the benefits of death with dignity. In turn, local leaders shared on-the-ground knowledge that helped our team refine our communications and education strategy. Together, we achieved a landmark victory, and the dedicated Mainers with whom we worked are well equipped to educate their fellow citizens about death with dignity as a compassionate end-of-life option.

Through over 25 years of end-of-life policy practice, we have developed a sophisticated analysis of policy opportunities throughout the country. This helps guide our investments of movement resources to states with the highest potential for success.

Other strategies include evaluating policy reform lessons from other social movements and applying them to our own and building relationships across issue advocacy nonprofit organizations to facilitate policy reform in the broadest sense possible.

Death with Dignity National Center has been at the forefront of the assisted-dying movement since its inception nearly 30 years ago. Our policy work led to the passage by voters of the nation's first assisted-dying statute, the Oregon Death with Dignity Act, in 1994. The Act, which we defended successfully before the U.S. Supreme Court, has been used as a model for death with dignity statutes in other states. We have played a central role in successful efforts to expand policy reform to Washington State (2008), Vermont (2013), California (2015), Washington, D.C. (2017), Hawaiʻi (2018), Maine (2019), and, most recently, New Mexico (2021). And we have spearheaded robust efforts in states that did not result in policy reform but greatly increased public support for death with dignity and helped us hone our national strategy.

The breadth of our work, the depth of our experience, and the strength of our reputation put us in a position to lead the death with dignity movement into the future. We have the capability to provide both a broad spectrum of services to a multitude of states, while still allowing us to focus in on the specific needs of each state through our unique mix of social movement expertise, funding capabilities, and wealth of knowledge gained from managing and assisting efforts in many states. Our process of maintaining a narrowly- focused mission and continually re-examining the tasks and activities necessary to achieve our mission helps us maintain effectiveness and efficiency and allows us to act quickly to address emergent issues.

In a quarter-century's worth of work, we have changed end-of-life policy to provide greater comfort and control to the terminally ill, both through the promotion of death with dignity policy reform and by influencing key decision-makers to increase awareness and availability of options such as hospice and palliative care.

Ten jurisdictions representing nearly 73 million Americans now have policies authorizing death with dignity. And a 2017 New England Journal of Medicine analysis found that residents of Oregon, where the death with dignity movement began, were more likely to die at home—something 85 percent of Americans wish for— and have other end-of-life wishes honored than residents of any other state.

Currently, we are working with 10 local partner organizations in a diverse group of states. We hope to double the number of partner organizations in the next two years. We will accomplish this by promoting and increasing participation in our Dignity50 State Leadership Incubator, through which we provide essential tools and training to dedicated activists seeking to launch and grow organizations dedicated to promoting death with dignity in their respective states.

We will continue to provide thought leadership in the media, education to a wide range of constituencies, and referral services for terminally ill patients and their families.

And we are actively engaged in defending existing assisted-dying laws through the U.S. court system, which has been a cornerstone of our work since the mid-1990s.

In Washington, D.C., we have joined a coalition of organizations focused on defending D.C. laws, including the Death with Dignity Act passed in 2017, from congressional interference. Some members of Congress are attempting to nullify D.C.'s assisted-dying law through the federal budget process. We have defeated their efforts in the past and will continue to work to protect the District's statute.

Financials

Death with Dignity National Center
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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
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  • Compare nonprofit financials to similar organizations

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Death with Dignity National Center

Board of directors
as of 07/21/2021
SOURCE: Self-reported by organization
Board chair

George Eighmey

Eli Stutsman

Carol Pratt

Lee&Hayes

George Eighmey

Stephen Dunn

Midge Levy

Deborah Ziegler

Lisa Vigil Schattinger

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 7/21/2021

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
Non-binary, Transgender
Sexual orientation
Gay, Lesbian, Bisexual, or other sexual orientations in the LGBTQIA+ community
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data