by Bonnie Edelstein
In Albany, New York, a group that began as a small group of friends talking about end-of-life issues has grown into a 500-member grassroots community that holds educational programs, mobilizes volunteers for advocacy activities, and has been instrumental in moving end-of-life options legislation through the state Assembly. And all of this has happened in just over one year!
Nobody is more surprised at our success than I am.
My interest in end-of-life issues and death with dignity was prompted by watching my elderly and frail mother suffer needlessly in her final years. She endured unwanted medical procedures that prolonged her life but lessened its quality. She kept saying to me, “Bonnie, I’ve lived too long.” I tried to comfort her but felt helpless. And angry. I felt that my mother deserved a more peaceful and humane end to her life, and I decided to do something about it for the future.
Early Efforts
Some initial efforts had been started in New York State in early 2015 to advocate for medical aid in dying legislation, but these were not yet well organized and were not local to the Capital Region where we are located. I envisioned a local community that would come together to learn about the many aspects of end-of-life issues, to have a safe environment for discussing difficult issues, and to mobilize volunteers for promoting legislation on medical aid in dying in New York.
I talked to friends about this, bringing it up gingerly in case there was strong resistance to addressing the topic. But people really wanted to talk about it, especially those who had seen their own parents through difficult endings, and those who were getting on in years themselves. I expanded the circle, and more people surfaced who wanted to talk about end-of-life issues and take action in New York. And some people began offering help in developing a grassroots organization.
First Public Program
With the help of volunteers I developed our first public program, featuring a panel discussion on death with dignity. Panelists included a bio-ethicist from a local college, an author of a book on death with dignity practices and laws around the world, and two New York City-based activists. A local public library provided free meeting space and also publicized the program through their extensive newsletter email list. Press releases went to all the local media, and volunteers put up posters in strategic locations.
The day of the meeting came, and we held our breath. Would anyone show up? Eighty people walked through the doors, along with newspaper reporters and TV cameras!
We were off and running. An organization (Death with Dignity-Albany) was born, with myself as director.
Building a Team
Our deputy director, Jeff Baltes, came onboard shortly afterwards and we have functioned as a team ever since, sharing the oversight of the ever-burgeoning organization. Jeff has taken over some of the administrative tasks as well as functioning as a liaison to outside groups and organizations that are requesting presentations and speakers.
We continue to present public programs featuring topics such as health and end-of-life transition-related forms (wills, health care proxies and advance directives), advocacy skills, and communicating your wishes with loved ones and caregivers. A recent program featured a showing of the film “How to Die in Oregon”, followed by a discussion. We communicate regularly by email with our membership to keep them informed of legislative progress, advocacy opportunities, and to provide other information of interest. This regular flow of communication keeps members engaged and helps to build our membership even further.
We also have an ever-growing corps of volunteers who organize and participate in advocacy actives such as having information tables at relevant events, making presentations and getting petitions signed. We collaborate with other lobbying groups making phone calls to constituents urging them to contact their legislators, and meeting with state legislators themselves to share views and provide information on medical aid-in-dying legislation in New York, called the Medical Aid in Dying Act.
A Grassroots Organization
And we do all this on a shoestring budget that comes completely from individual contributions. Our e-mail newsletter program uses a free version of Mail Chimp. Our website was designed pro bono by a professional who supports our movement. The library continues to provide free meeting space, and films our programs to be broadcast later over a community TV channel. A professional writer and media expert provides his services for external communication at no cost.
We do ask for donations at our programs and through our web site, and people continue to support us to the extent that is necessary. When people sign our petitions, attend our programs or visit our web site we ask them to join our e-mail list, which has proven to be a very effective strategy for expanding our membership.
Significant Progress
We are very proud of the community that is being built and the impact we have already had in just over one year. Many people who have attended our programs have taken action to develop or update their Advance Directives and have expressed their wishes to their loved ones for the first time. More people are talking about end-of-life issues in the community, and we have greatly increased the presence of the issue in the media.
And we are very pleased that the Medical Aid in Dying Act has recently been approved by the Health Committee of the state Assembly.
It’s very significant progress, and we are proud to have played a role in this success!
About the Author
Bonnie Edelstein is the executive director of Death with Dignity-Albany, a volunteer-run grassroots group established in 2015 whose mission is to provide a forum for education, discussion and advocacy related to death with dignity and end-of-life issues, reflecting the belief that everyone deserves to have a dignified, peaceful death. A former nonprofit management consultant, Bonnie is dedicating her retirement to following her passion: working to create better endings and enabling people to have a peaceful and humane death.
Featured image by Onasill ~ Bill Badzo.
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