Four Years of Death with Dignity in Vermont

Vermont’s independent spirit and progressive politics have long placed the Green Mountain State at the vanguard of social movements. From the landmark Baker v. Vermont case that paved the way for the legalization of same-sex marriage to precedent-setting environmental policies that keep it at the top of “greenest state” lists, Vermont has led the way and provided a model for other states seeking to realize social change.

In 2013, Vermont achieved another first. With the passage of Act 39, the Patient Choice and Control at End of Life law, the state became the first in the nation to enact a Death with Dignity law through the legislative process. (Oregon and Washington’s Death With Dignity acts, enacted in 1997 and 2008, respectively, were passed via ballot initiative.)

The Path to Victory

As with the laws in Oregon and Washington, Vermont’s statute has faced and survived powerful opposition and legal challenges. The story of its path to victory began long before Act 39 was signed into law, with a few dedicated local advocates and the Death with Dignity National Center working in concert to build a movement from the ground up.

Patient Choices Vermont and Death with Dignity

A small but formidable nonprofit, Patient Choices Vermont, has been at the center of the movement since its inception in 2002. As is so often the case with Death with Dignity advocates, its founders, Ginny and the late Dick Walters, had watched people close to them suffer painfully near the end of their lives.

“Death with Dignity is a cause I feel in my heart, soul, and conscience,” Dick wrote before he died. “It is worthy of every one of us who values life, treasures dignity, and wants never to be told by a stranger or a bureaucrat that our life is not our own, or that suffering is the property of their law or morality.”

Determined to bring end-of-life choice to all Vermonters, the Walters looked to Oregon for guidance on how best to organize and advocate for passage of a bill. Oregon Death with Dignity, our predecessor organization, provided strategic and moral support, with staff leading countless conference calls and traveling across the country to meet with advocates in person. Many conversations and living-room meetings later, Patient Choices Vermont was born.

Death with Dignity: A Family Affair

Advancing the conversation from initial idea to legislative action was a family affair. The Walters’ daughter, Betsy Walkerman, an attorney and current president of Patient Choices Vermont, said the process of drafting the legislation, introduced in 2003 as S.112/H.318, and rallying support for its passage was simultaneously invigorating and overwhelming.

“My dad [Dick Walters] said, ‘I think I’ll get a bill passed [in a] year,’” Walkerman recalled. “Then reality started to set in. This would be a multi-year process.”

Death with Dignity is…worthy of every one of us who values life, treasures dignity, and wants never to be told by a stranger or a bureaucrat that our life is not our own, or that suffering is the property of their law or morality.

The learning curve was steep, and building relationships with legislators, medical professionals, terminally ill patients, and their loved ones required patience and determination. But the Walters were undaunted.

Dick threw his energy into identifying legislators who were supportive of Death with Dignity, and succeeded in influencing 38 of 150 Vermont House members and 8 of 30 Senate members to introduce the 2003 bill.

Ginny, whom Walkerman calls “the database wizard behind everything,” took a lead role with Patient Choices Vermont in building a network of volunteers and advocates with personal stories about their own or loved ones’ struggles with pain and loss of control as their terminal illness advanced. Many of them testified at dozens of hearings on four separate bills introduced between 2003 and 2006.

Incremental Progress

None of those bills advanced out of committee, nor did several others in the following five years. But each year brought incremental progress, driven by the grassroots efforts supported by the Death with Dignity National Center. We provided strategic guidance, became a fiscal agent for Patient Choices Vermont, raised significant funds for a robust and sustained on-the-ground campaign, and built broad-based support via electronic communications and media outreach. As with all our work, we stayed in the background, recognizing that the movement must be led by the people at the grassroots who know how best to connect with their fellow citizens to realize change.

All the while, Patient Choices Vermont looked to Oregon’s pioneering movement and statute as a model to emulate.

“The Oregon experience was very, very valuable,” Walkerman said.

Expert Testimonies, Extensive Travel

So was the expert testimony provided by those who led the campaign for Oregon’s Death with Dignity Act. George Eighmey, our current Board president, former Oregon state legislator, and executive director of the organization established to facilitate implementation of the Oregon Death with Dignity Act, was instrumental in the passage of that law and the successful defense of the statute from formidable opposition. He testified numerous times before the Vermont State Legislature, fighting opponents’ misleading arguments with hard facts.

“Having traveled twice the length and breadth of the state of Vermont presenting information on Oregon’s law and testifying before the Vermont legislative bodies made me understand how important it is to provide accurate facts upon our law so as to refute the unfounded and false allegations of opponents,” Eighmey said.

An Inflection Point

Every movement has an inflection point, a moment when momentum becomes irreversible. Often, it is catalyzed by a leader who can bring about real change. For Walkerman, the inflection point was when Peter Shumlin was re-elected governor in 2011.

“When you have a governor who’s either for or against [an issue] in either way, legislators don’t want to put their political capital on the line opposing him,” Walkerman said.

Shumlin had spoken out in favor of Death with Dignity during his first campaign, and made Death with Dignity legislation part of his re-election campaign platform. His leadership galvanized support for the issue in both legislative chambers. Vermont State Senator Claire Ayer and House Speaker Shap Smith played crucial roles in bringing a bill forward in January 2013.

Making History in 2013

The full Vermont State Legislature passed the bill on May 13, 2013, and Vermont made history. On May 20, Governor Shumlin signed Act 39 (S.77) into law. The Green Mountain State was the first to pass a Death with Dignity law through the legislative process.

Death with Dignity National Center Executive Director Peg Sandeen remembers the strength of the relationships she built with citizens whose commitment to ensuring end-of-life choice for all Vermonters made Act 39 a reality.

“The Death with Dignity National Center worked 10 years in Vermont to bring the Patient Choice and Control at End of Life bill to fruition,” Sandeen said. “During my time there, I came to know dedicated activists, legislators, and lobbyists. We all worked together, sometimes as close as family members, to get this bill passed. The personal relationships I built in Vermont, as well as the collegial relationships, continue to enrich my life today, four years after the bill was signed by the governor.”

Act 39 has provided terminally ill Vermonters the option to end their life peacefully on their own terms. As of December 2016, the law had been used by 38 Vermonters, including Governor Shumlin’s father, and Dick Walters, pioneer of his state’s Death with Dignity movement.

The Fight for Death with Dignity Continues

But the fight to protect the law isn’t over. Just this year, religious groups brought a lawsuit seeking to undermine Act 39, and the Vermont Legislature considered four separate bills that would limit access to the law.

The suit was dismissed, and the bills have not moved out of committee. Nevertheless, we remain vigilant, ready to stand with our friends in Vermont as they continue their courageous work to protect their hard-won Death with Dignity law.

Walkerman is grateful to people across the country who have supported Vermont’s campaign over the years. Four years after the law’s passage, she says the work remains both inspirational and essential.

“Every week I get phone calls and notes from families” wanting to learn more about how to access and support Death with Dignity, Walkerman said. “This work is really powerful. It has a real impact on peoples’ lives.”