On February 6, Death with Dignity National Center Executive Director Peg Sandeen delivered the “State of the Death with Dignity Movement” address. Below is a video of the webcast as well as a written summary of her remarks.
It is an honor to speak with you today and give you an update on what is happening in the death with dignity movement. We live in an unprecedented time for assisted dying, and today, I’m going to talk about our movement’s accomplishments in the past year. I’m also going to provide an overview of end of life care in general in the United States, and finally, I’ll talk about where we are going next.
Three States in 15 Months
We live in an unprecedented time for assisted dying. The death with dignity movement continues to gain momentum nationwide. In the span of just 15 months, three states adopted aid-in-dying laws. Hawaii enacted a death with dignity law in April 2018; New Jersey, in April 2019; and Maine, in June 2019.
Last year was the first time in the history of the death with dignity movement that two state legislatures passed death with dignity laws in the same year. What’s so notable about these three states is that they’re so different from each other demographically, geographically, and culturally. Taken together, they encompass the breadth and growing diversity – and appeal – of our movement.
In It for the Long Haul
Of course, none of these victories happened overnight. We started our work in Maine with a ballot-initiative campaign 20 years ago; our work in Hawaii dates back to 2002 when we partnered with then-governor Ben Cayetano to bring death with dignity policy reform to Hawaii.
We invest in states for the long haul, collaborating with grassroots advocates, lobbyists, and lawmakers to get the job done.
Our recent successes mirror our success in other long-haul state campaigns over the years. It took 25 years of work before the End of Life Option Act passed in 2015; we also worked to defend the law in court when opponents challenged it following its passage. In Vermont, it took over a decade of work at the grassroots and with lawmakers before Vermont became the first state to pass a death with dignity law through the legislative process.
Today, 70 million people live in a state with a death with dignity law. This illustrates rapid progress in our movement. Just five years ago, less than 10 million people had access to a death with dignity law; now, more than 1 in 5 Americans do.
Changing Conversations About Death and Dying
Our progress and our achievements are fueled by, and are fueling, significant changes in conversations about death and dying around the country.
When a death with dignity law is enacted, it does not only give certain terminally ill individuals an end-of-life option that can bring peace and comfort in their final days. It improves end-of-life care for everybody.
We’ve seen it in Oregon with increased hospice utilization and more people dying at home; we’ve seen it in California, where some medical professionals reported having more in-depth conversations with patients about all end-of-life care options following the passage of the state’s assisted-dying law,
Technology and modern medicine have given us so many benefits, but many times we’re not extending life; rather, we’re prolonging death. For some people this results in suffering instead of a peaceful death.
A Cultural Shift in the U.S.
While our movement has always confronted these medical realities head on, we are seeing a shift where conversations about death and dying are coming out of the shadows and into the mainstream.
In a Kaiser Family Foundation study from 2017, an overwhelming 69 percent of Americans reported that death is typically a topic that people avoid, but at the same time, over half (56 percent) of the same respondents say they’ve had a serious conversation with a spouse, parent, child, or any other loved one about their own wishes for end-of-life medical care.
So, we are at this crossroads, teetering between the point where death is a topic to be avoided to a time when people begin to acknowledge, prepare for, and even plan for their death. More attention is being paid to people at the end of their life and what we as a culture and society can do to help them end their suffering on their own terms
Through organized events like Death Over Dinner, Death Cafes, and The Dinner Party, people are coming together – sometimes in each other’s homes, sometimes in more public spaces – to share personal stories in a social atmosphere that demystifies and de-stigmatizes death and dying.
There are podcasts, books, social-media campaigns, and an ever-growing number of op-eds in media outlets across the country that tackle these issues. We’re also seeing new policies being adopted, such as Washington’s recently-passed law allowing for composting of human remains, that would have been unimaginable a decade ago.
Younger Generations Leading the Way
What’s most remarkable about this is that younger generations are leading the way. They are developing apps, YouTube channels, and businesses meant to help us curate our lives and our deaths. They are facilitating workshops and organizing social events as part of building what is known in the U.S. as the “death-positive” movement.
On a smaller scale, we notice that young people contact our organization much more frequently than they did even two years ago. It is the children of the Boomers who are starting to shift culture. As they begin to confront their parents’ mortality and think about death and dying in a more personal way, they are sharing their experiences in service of creating a robust dialogue about how to prepare for the end of life, both for their loved ones and for themselves.
This has been a slow social change in our country, but it’s vitally important.
Major Death with Dignity Campaigns in an Election Year
During this time of extraordinary change in our movement, we are leading major campaigns and supporting grassroots efforts across the U.S. It’s a presidential election year, a time when advocacy issues tend to take a backseat and presidential campaigns take the spotlight.
Nevertheless, we are running three major political campaigns in three very significant states: Massachusetts, Maryland, and New York. If these states passed laws, we will go from 70 million people with access to death with dignity to 85 million.
At a recent press conference with our local allies in the state Capitol in New York a few weeks ago, legislators and bill sponsors told us that there are enough votes to pass legislation. The onus is now on us as movement leaders to convince the New York Legislature that ours is an important issue for passage this year.
New York has a potentially huge impact because of its large population and its status as a bellwether state. If New York passes legislation, the smaller states in the region will take notice.
To illustrate our commitment to passing a law in New York, we launched a video and social campaign featuring Jonathan Partridge, a television producer in New York City. In the video, he shares the story of his mother’s life and painful death from a terminal illness, and how his personal experience inspires his advocacy in New York. Thousands of people have viewed the video, and many people have sent letters to their legislators urging them to pass a law.
We are also dedicating significant resources to our campaign in Massachusetts, strengthening our partnership with a grassroots group and working with a top-notch lobbyist. The bill is still very much active, and all eyes will be on Massachusetts to see if the state known as a health policy leader will adopt an assisted-dying law.
Our perennial challenge, of course, is that we are up against the institution of the Catholic Church, which has huge influence in state politics and a huge war chest with which they will try and defeat us. What we are communicating to legislators, as we have many times during our many years of involvement in Massachusetts, is that the majority of Massachusetts residents, including Catholics, support this.
We have returned to Maryland for the fifth year in a row and have mounted a full campaign, engaging legislators, lobbyists, and multiple advocacy organizations.
Our work in Maryland has been a game of inches. We came so very close to passage last year, and we are very close this year. We are pushing forward in a coordinated fashion with our allies. We are optimistic about our chances to pass a law in 2020, and about the impact a passage of a law in Maryland would have on other states in the mid-Atlantic region that are considering legislation this year.
Even more remarkably, we’re also seeing states across the country introducing bills for the first time in history, such as Georgia and Kentucky. This shows the breadth of our movement and the power it has to connect people across every region of the U.S.
What the past few years have shown us is that we are almost past the time when it took 10 or 20 years to get a bill passed. It’s just not going to take as much time moving forward – and we have our supporters to thank for that.
A Time-Tested Model for Policy Change
At Death with Dignity, we have a time-tested model for making policy change. We’ve come to think of it as a 3-legged stool:
We work with experts in state-level politics, such as legislators, lobbyists, and pollsters, to get a sense of the political relationships and activities in a state.
We also work with grassroots advocates and organizations to give them the infrastructure they need to communicate to legislators that death with dignity is an important issue. We’re supporting grassroots organizations in states where there is interest in passing a law, such as Arizona, New Mexico, and New Hampshire, and also are working with legislators and lobbyists to lay the groundwork for 2021 session in states like Nevada.
We were so impressed by the work grassroots advocates in Maine did to rally public support, provide testimony, and meet with legislators that we hired their leader, Valerie Lovelace, to work with us to help organizations around the country replicate her success in Maine. We are very excited to see her grow our State Leadership Incubator program.
We also provide our historic expertise in drafting and passing laws. We help draft legislation and assess amendments to bills. We work with legislators on countering opposition messaging. We provide strategic and fundraising support to the local efforts.
When all three legs of the stool are strong, we see success on our issue in a legislative environment.