Why I Advocate for Death with Dignity


When I was growing up in Boone, Iowa, death and dying were a matter of fact in my family. My mother was a hospice nurse, and when we gathered around the dinner table, conversations about death were common.

But I wouldn’t face death on a deep, personal level until much later. In 1989, I graduated from college and met John. By the time we got married two years later, John had been diagnosed with HIV. Nearly everyone with the virus died badly back then, and my husband’s immediate response was, “I don’t want to die that way.”

It was then that I truly understood how important it is for a dying person to be able to decide how they die. As his health declined, John wanted to be in control of his own medical care, including how he died. He’d been in charge of his life; all he wanted was to be in charge of it until the very end.

Time and again, I’ve seen people join the Death with Dignity movement because of a personal experience like mine. Will you share your story with me? What inspired you to get involved with our cause? What does Death with Dignity mean to you?

When John (pictured with our daughter Hannah) died in 1993, I went on to become a social worker. The profession’s values — personal autonomy and self-determination as foundations of human dignity — reflect my own. It was at around that time that the issue entered the popular debate and Oregon passed the nation’s first Death with Dignity law. Death with Dignity had not been an option for John, so I’ve dedicated my life to creating an environment for dying individuals to be empowered to control how they die.

After managing the AIDS Project of Central Iowa and finishing my doctoral coursework at Portland State University, I accepted the position of Executive Director at the Death with Dignity National Center. To call this an exciting opportunity is an understatement: barely six months into the job I was standing on the steps of the US Supreme Court as we defended the Oregon Death with Dignity Act. Since then, we spearheaded the successful ballot initiative in Washington and helped pass the Vermont law.

This is my story, the reason I began my lifelong journey of advocating for Death with Dignity. And, it is stories like yours that inspire me to continue doing this important work. It would be an honor if you shared your story with me today.

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Week 35/2015 in the Death with Dignity Movement

Last week (August 24 to August 30, 2015) the California End of Life Option Act, introduced in the state Assembly’s extraordinary legislative session on healthcare, made its way through the legislature; a hearing in the special Health Committee is scheduled for September 1.


Assembly Members Susan Talamantes Eggman, Mark Stone, and Luis Alejo co-sponsored and introduced a new bill, amended from SB 128 which the California Senate passed on June 4.

Elsewhere & Other Stories

Image by DaveBleasdale.

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Week 34/2015 in the Death with Dignity Movement

Last week (August 17 to August 23, 2015) a group of California Assembly Members introduced a modified End of Life Option Act bill in their chamber of the state legislature, for an extraordinary legislative session on healthcare issues. The Death with Dignity bill is back in the California legislature, and if it passes in the special session, it may become law by year’s end.


Assembly Members Susan Talamantes Eggman, Mark Stone, and Luis Alejo co-sponsored and introduced a new bill, amended from SB 128 which the California Senate passed on June 4.

Elsewhere & Other Stories

Image by DaveBleasdale.

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Week 33/2015 in the Death with Dignity Movement

Last week (August 10 to August 16, 2015) the New Mexico Court of Appeals on Tuesday overturned a lower court’s decision that had, in effect, made Death with Dignity legal in the state. And, on Friday, a San Francisco Superior Court judge upheld California’s physician-assisted dying ban, saying the matter should be left for the state legislature to decide.

New Mexico


Other Stories

…And a Few We Missed the Previous Week

Image by Elena.

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Dying the Way I Want: Death with Dignity in Maine

This is a guest post by our long-time supporter in Maine, Valerie Lovelace. Val is the executive director of It’s My Death, which she founded to honor a promise to her sister Dee, dying of cancer, “to teach others how to be with dying, how to speak and listen to one another the way we had learned to speak and listen, and how to go on even when afraid.” She is an inter-faith minister, ordained by calling, studying and practicing in the traditions of her elders and teachers, who are Native American, Christian, and Buddhist. She is a hospice volunteer, artist, and the parent of three adult children. She is also a homeopathic practitioner and a Reiki Master, retired from the U.S. Navy, and a trained EMT.


Maine Should Have a Death with Dignity Law

Maine’s legislature recently failed to pass LD 1270, An Act Regarding Patient-Directed Care at the End-of-Life. The bill would have allowed a qualifying, terminally ill adult to ask for a prescription medication to take at a time of their choosing as their death becomes imminent. It had a very clear process and protected all who chose to participate while forcing none who are morally opposed.

LD 1270 should have passed. It was modeled on the same law Vermont passed in 2013. Vermont’s law has been working exactly as intended. At last count, eleven people have exercised use of an end-of-life prescription in that state.

Opposition to This Legislation Is Hogwash

California’s legislature stalled SB 128, a similar bill, due to fierce opposition from some organized religious and disability rights groups.

In Tennessee, where a bill was referred to summer study, former legislator, John Jay Hooker, now 84 and dying, has sued his state in an attempt to gain his own liberty in death, asking that he be granted the civil liberty to ask his doctor for a life-ending prescription to take at the end. His physician is willing to write the prescription if granted legal permission to do so. Like bills in Maine, California, and elsewhere, Tennessee’s Death with Dignity bill is meeting the same resistance from the same groups spouting the same tired rhetoric.

Oregon’s Death with Dignity law has been in effect since 1997. Despite the fact that seventeen years of data and nine independent research studies prove the laws are working as intended, activist groups still feel they should prevent any movement at all in the discussion around civil liberty and dying. It’s hogwash.

In Oregon, Washington, and Vermont the World Has Failed to End

Is the issue controversial? Yes. Does an end-of-life prescription law demand careful, thoughtful legislation? Absolutely.

Dying wishes are very private. There are physicians, nurses, palliative care specialists, hospice folks, clergy, legislators, disabled people, family members, patients, pharmacists, and so forth, who fully understand the issues and concerns, and help to draft sound legislation and policies for implementation.

The fact that organized religious and disability groups, neither of which, by the way, speak for everyone who is disabled or religious, are involved in a crusade to squash each attempt at legislation is not an indication that the legislation is bad or that the issue is wrong. It’s an indication that people aren’t willing to read the bills, learn about the issues, or recognize that what a person needs while dying is a private and some could argue sacred matter.

But it should be sacred to the needs of the individual and their circumstances, not sacred to the ideas of others who wish to assert their beliefs over those who believe differently. Those who skew the truth suggest over and over that even a good law will result in total disaster and the end of the world as we know it.

The same was said for abolition, women’s voting rights, desegregation, freedom in marriage, and is argued for every other issue involving social change and civil liberty. It’s a good cue: If opposition is out making noise about how all of society as we know it will collapse if we allow such a thing to happen, then it must be about social change and civil liberty.

I Want Liberty

A very small number of people need this legislation. Less than one half of one percent of all deaths in Oregon occurred through the state’s Death with Dignity law. That number means this year there are around 30 to 35 people in Maine who will die without the civil liberty they need. Their doctors, even if willing, cannot legally help them. I know at least two of them. And it isn’t right. It isn’t right that special interest groups with their own agendas dictate for the rest of us how our dying ought to go.

I want social change. I want liberty. I don’t want to die the way someone else thinks I should.

Image by Ken Rowland.

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Week 32/2015 in the Death with Dignity Movement

Last week (August 3 to August 9, 2015) the Washington State Health Department released the 2014 annual report on the implementation of the Death with Dignity law. Read the full report, our highlights, or a write-up in Seattle Weekly.

In the run-up to the release of the report, the Vashon-Maury Island Beachcomber newspaper, a hyperlocal publication on a Puget Sound island southwest of Seattle, ran two stories related to the state’s Death with Dignity law.

Image by Howard Ignatius.

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Washington State Releases 2014 Death with Dignity Report

The Washington State Department of Health yesterday released the 2014 annual report on the implementation of the Washington Death with Dignity Act. The figures underscore not only that only a small number of people use the law, but also that the Washington Death with Dignity Act continues to work flawlessly and provides ease of mind and relief to Washingtonians facing the end of life.

In 2014, 176 terminally ill Washington residents received a prescription under the Act to help hasten their death. This is a 2% increase over the previous year. Of patients with the prescription, 170 are known to have died: 126 after ingesting the medication and the rest either let the disease take its course or their status is unknown. Since 2008, when the Act went into effect, “725 adults with terminal illness have chosen to end their lives with a physician-prescribed lethal dose of medication,” according to the report.

Fifty-seven percent of participants in the Washington Death with Dignity Act were women. Ages ranged from 21 to 101 years. A vast majority, 92 percent, were Caucasian, and 75 percent had at least some post-secondary education.

Cancer was the underlying illness for 3 out of 4 participants, ALS contributed with 13 percent. Ninety-three percent of patients had some form of insurance.

The three chief end-of-life concerns for the Death with Dignity Act participants who have died were losing the ability to engage in activities that make life enjoyable, losing autonomy, and losing dignity. Ninety-two percent of patients died at home, five in a long-term care facility. Ninety-six percent of patients experienced no complications after ingesting the medication.

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Week 31/2015 in the Death with Dignity Movement

Last week (July 27 to August 2, 2015) was a very quiet one in the Death with Dignity movement, as the middle of the summer tends to be…

Image by Elena.

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Week 29/2015 in the Death with Dignity Movement

Newspaper Stack

Last week (July 13 to July 19, 2015), as legislatures went into summer recesses the Death with Dignity movement entered a “slow news day” period.

Image by [BarZaN] Qtr.

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Why Religiously Unaffiliated Americans Support Death with Dignity

Sarah Levin headshot

This is a guest post by Sarah Levin (the subheadings are ours). Read our open call for guest posts →


Sarah Levin is the Legislative Associate at the Secular Coalition for America, where she oversees the Secular Coalition’s state chapter program. She is passionate about the constitutional separation of church and state and grassroots organizing. Sarah graduated from American University cum laude with a Bachelor’s degree in International Studies. Follow the Secular Coalition for America @seculardotorg.

When Tom Manger stood up to testify in support of the End of Life Options Act in Sacramento, he spoke on behalf of all religiously unaffiliated Californians who share his belief in the right of “each individual to face their inevitable death on their own terms – without interference from others.”

“Without interference from others.”

It is unthinkable that the conditions of one’s death, one of the most deeply personal moments in one’s life and the lives of their families, might be influenced by the personal beliefs and ideologies of strangers. But this is the reality confronted by those tragically faced with terminal illnesses in all but five states.

Why do religiously unaffiliated Americans care about death with dignity? What motivated Tom to make a trip to the California state capitol just to testify in support of the End of Life Options Act?

With some issues, like climate change, the religiously unaffiliated rally behind the conviction that science and research should triumph over myths and misinformation. With other issues, like government endorsement of religion, our community unites to protect the constitutional separation of church and state for the benefit of all faiths and none. Death with dignity is a unique issue that speaks to both aspects of our core values, as opponents are both driven by faulty evidence and religious dogma. We strongly believe that laws and policies that impact all Americans must be religiously and dogmatically neutral, based upon science, evidence, and reason, not ideology.

Opposition Arguments Hold No Water

Some opponents of end of life choice claim that death with dignity laws leave vulnerable individuals open to abuses and coercion, and will lead mentally ill people to commit suicide. With the built-in protections of Oregon’s death with dignity law in place for more than 17 years without a single report of coercion, these claims simply don’t hold any water.

Other opponents to death with dignity cite the religious tenet of the sanctity of life. One’s preferences for the condition of his or her own death are based on deeply, sincerely held beliefs and values. These beliefs are just as valid and sincere as others’ religious beliefs and should be treated respectfully with equal standing before the law. It is wrong and unconstitutional to allow the religious beliefs of some to trump the personal, nonreligious beliefs of others.

Speaking to Humanist Values

The letter of the law is not the only reason why this issue touches the religiously unaffiliated community so deeply. The right to compassionate end of life options speaks to the humanist values of dignity, autonomy, and freedom of the individual. Editor in Chief of The Humanist magazine, Jennifer Bardi, eloquently wrote in her letter from the editor on December 22, 2014, “when suffering becomes unbearable and treatment to alleviate that suffering fails or doesn’t exist, it seems the humanist philosophy must support an individual’s right to choose to end his or her life.” The Council for Secular Humanism, a program of the Secular Coalition’s member organization, the Center for Inquiry, explicitly endorses the right to die with dignity in its Affirmation of Humanist Principles.

For many secular activists, this issue touches them personally. Janice Rael, Co-Chair of the Secular Coalition for New Jersey, experienced firsthand the suffering families endure when their loved ones go to desperate lengths to end their lives when there is no compassionate alternative. “My uncle shot himself rather than endure one more day with colon cancer…all because the law wouldn’t let his doctor prescribe him medication to choose a dignified death.” Her personal experience has motivated her to work tirelessly for the passage of the Aid in Dying for Terminally Ill Act in New Jersey.

Death with dignity evokes our desire to empower the individual to take control over their own life, free of the burden to prove one’s worth to a supernatural being in order to gain access to a better life after death. At the same time, with this freedom comes a great responsibility to our fellow human beings and to the world we inherited. The tragic stories of people who die a wretched death despite their wishes to die with dignity compel the religiously unaffiliated to act, both out of compassion for the dignity of others and our innate desire to defend individual freedom.

Religious Values vs. Suffering

For the religiously unaffiliated, it comes down to this: will the religious values and personal beliefs of some be imposed on all Americans? Will religiously-based arguments be permissible in a secular debate concerning compassionate options for people who are suffering?

Our answer is no. The Secular Coalition for America, our 17 member organizations, and the 23 percent of Americans who identify as religiously unaffiliated will stand firmly behind the death with dignity movement and support efforts throughout the country to bring end of life choice to all Americans. We will do so for the sake of individual dignity and to defend the constitutional separation of church and state.

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