For the fourth consecutive year, the New York State Legislature will consider a Death with Dignity bill. The support for an assisted dying law in the Empire State is indisputable: recent surveys show that 77 percent of New Yorkers support death with dignity. But challenges remain for advocates, including well-funded opponents and legislators concerned about pledging support for a controversial issue.
Bonnie Edelstein, the executive director of Death with Dignity-Albany, has been on the front lines of the grassroots campaign for end-of-life policy reform in New York. Through events, educational workshops, and media coverage, the group has built a network of over 600 assisted-dying advocates. This legislative session, the organization is joining supportive legislators and other advocates in expressing support for passage of A 2383, the Medical Aid in Dying Act.
We spoke with Bonnie and her Deputy Director, Jeff Baltes, about the year ahead, the unique opportunities and challenges of grassroots organizing in New York, and the personal connections to the Death with Dignity movement that inform their advocacy.
Interview edited for length and clarity.
Death with Dignity National Center: Many advocates who become involved with the Death with Dignity movement do so because a loved one suffered painfully and needlessly at the end of life. Do you have a personal connection to the movement for greater end-of-life choice?
Bonnie Edelstein: What got me involved in the movement was having seen my mother and my aunt through the end of their lives. Both of them died in hospitals and in pain—exactly what they did not want. It left me feeling that there had to be better ways to manage the end-of-life transition and that I wanted to get involved in that cause.
Jeff Baltes: Several people who were very close to me suffered prolonged and difficult deaths. It was something that was not easy to see. I didn’t give a lot more thought to it at the time; I just thought, well, this is the way it is for the terminally ill. But a year and a half ago, I saw an article in the paper about a local Death with Dignity organization and I decided to contact them. I went to a meeting, got more involved, and Bonnie drafted me to take a more active role.
What do you think is most important for non-New Yorkers to understand about the campaign for Death with Dignity in your state?
JB: New York is a very large, complex state. There are significant political differences from downstate to upstate. Because of that, there are a lot of conflicting or competing viewpoints that need to be reconciled. One of the great challenges in a large and diverse state like New York is trying to get everybody on the same page and satisfy all these distinct concerns and viewpoints.
BE: In New York, the two large opposition groups – the Catholic Church and the disability community – are extremely well funded. That’s not unique to our state, but the strength of their opposition and the resources they have to put behind their campaigns is noteworthy.
What are the most effective ways of countering the opposition and making your voice heard?
BE: I think all we can do when we’re talking to people in the community is use the argument I used with my state representative last week, who is Catholic and is worried about the opposition she would face. I said that we fully respect [opponents’] values and choices for the end of their own lives but we don’t think specific religious belief and dogma should dictate public policy.
JB: The Catholic Church as an institution is opposed, but a large percentage of practicing Catholics are in favor of the measure. We focus on promoting or supporting those who are in favor of the measure at the grassroots level by helping them to access resources and opportunities to gain knowledge and understand ways they can influence the legislative process.
What do you see as the greatest opportunities in the upcoming legislative session, and what do you see as the greatest challenges to passing a bill?
JB: There are so many different issues on the table right now in the Legislature; this is but one. However, public support has grown exponentially and legislative sponsorship has nearly doubled. One of the greatest challenges is going to be keeping this in the forefront in the legislative arena. We have to ensure it is given the attention it deserves through continued advocacy, communication, and promotion strategies.
BE: That’s a key strategy for this year: keeping the bill top of mind.
Your organization’s work encompasses much more than the campaign to pass assisted dying legislation in New York. What other initiatives are you working on this year?
JB: We present public programs and workshops related to a wide variety of end-of-life issues, such as legal planning, communicating your end-of-life wishes to loved ones, and education on hospice and palliative care. We provide facilitated workshops that provide opportunities for people to talk about difficult end-of-life issues. We also hold training sessions on how to be an effective advocate. A full list of our programs and resources is available at http://www.deathwithdignityalbany.org/
Through these programs and events, we’ve been building a community that comes together in person. Out of that emanates conversation and connection. We’ve built a strong network of about 670 people, and it’s growing every day. When we need to mobilize people, we have a network that can be activated when it matters most.
BE: Since we’re entirely volunteer run, we have to be careful of not biting off more than we can chew. We’re constantly needing to evaluate new opportunities as they arise. We’re about to convene a small planning group to decide how best to manage our organization and to evaluate what we realistically can take on.
We fully respect opponents’ values and choices for the end of their own lives but we don’t think specific religious belief and dogma should dictate public policy.
How do you continue to build your network of advocates?
BE: This is a very long-term initiative. One of the challenges we face is keeping our members and volunteers engaged over the long haul. We still have very good attendance at our programs, but we need to make sure that interest in our work doesn’t diminish over time. We want to focus on maintaining a strong stream of new volunteers through our in-person events and our electronic communications. We also have been quite successful at getting press coverage of our events and initiatives, which broadens our exposure and brings in new people.
JB: I am fond of saying, when we use the word “advocacy,” most people are thinking of citizens marching with banners on a picket line. Advocacy is so much more than that. It’s correcting misinformation when you hear it. It’s talking to legislators, visiting their offices, sharing information, making phone calls. We want people to understand they can be advocates in multiple ways, even with limited mobility. They can write letters, make phone calls, participate in campaigns where there is an opportunity.
BE: It’s not an easy road, but momentum is building. Even though there are still institutional obstacles, the vast majority of people are in favor of the legislation.