Talking about death and dying is really hard. I should know, I’ve been prodding you to talk to me about death and dying for more than 7 years as we’ve worked to pass New York’s Medical Aid in Dying Act. 

What’s harder is developing relationships with dying advocates who want the peaceful option of medical aid in dying, teaching them the advocacy ropes, facilitating their conversations with lawmakers, and then learning that they've died. One after another. These two weeks have been particularly hard. Our campaign mourns the deaths of Susan Barra & Jennifer Milich, two advocates who have shared their stories with you in hopes that you’d use your power to give them the right to die on their own terms. I couldn’t explain to them why their stories didn’t make enough of a difference to pass this law.

Jennifer’s was the first story we shared with you last year. Hers was the #1 reason we gave you for why you should support New York’s Medical Aid in Dying Act: “Because this isn’t about politics,” Jennifer said. “It’s about peace at the end of life.” 

What’s even harder than talking about death and dying, and losing advocates in this fight? Actually suffering needlessly at the end of life. 

Jennifer just wanted peace, and peace she did not have. She died, in hospice, in a facility where she spent months – often unconscious, often suffering – just waiting to die. Jennifer’s suffering and slow death were exactly what she feared.

Susan Barra also pleaded for peace and the comfort of having the option of medical aid in dying when her treatment options ran out. She didn’t have that comfort because the legislature failed to act in time for her. Hers was the 21st reason we shared with you last year.

I shared the news of Susan’s death with another outspoken advocate from Rochester who is living with a terminal illness, Susan Rahn. Susan told me:

The pandemic put a huge obstacle in the way by not being able to visit these folks in person and see/hear from those of us who desperately want this option. Time isn’t on our side. The longer they drag their heels, we will continue to die a death not of our choosing & with excruciating pain.

Are you on the fence about this issue? If so, the time is now to come down off the fence and pick a side. Staying undecided for one more year won’t prevent people from dying. It will simply mean that more people will die suffering needlessly. And maybe the next advocate we lose will be your constituent. 

You can learn more about Jennifer MIlich’s story by watching this compelling :30 TV ad with Dr. Jeff Gardere that ran in 2020; or the Zoom video she recorded with one of your colleagues, Assemblymember Karines Reyes. 

Susan Barra and Susan Rahn never met in person, Susan Barra having joined our campaign after the pandemic was in full swing. But, as they wrote in an unpublished letter to the Rochester Democrat & Chronicle in 2020: 

We are two Susans who’ve never met in person, but know each other because we share an unfortunate common bond: we are both terminally ill. 

 While we are both still living our lives to the fullest as best we can amidst this global pandemic, we both know that the end could come sooner for us and that our illnesses are likely to cause a potentially agonizing death.

One of us, Susan Rahn, has been living with metastatic breast cancer for seven years, and the other, Susan Barra, was diagnosed with chronic myelomonocytic leukemia last year. We have both watched friends and loved ones die painful deaths that we are determined to avoid. 

That’s why we’re active in a growing grassroots movement to demand that our Legislature pass the Medical Aid in Dying Act immediately. To be clear, medical aid in dying would only be an option for a small group of people: mentally capable, terminally ill adults with a diagnosis of fewer than six months to live, confirmed by two doctors. But it would provide great comfort to thousands of New Yorkers and their families. 

. . .  We need our legislative representatives to act in 2020 before it’s too late for us.

… This humane and compassionate end-of-life care option isn’t for everyone; we get that. But it should be available for everyone in the position that we will both find ourselves in. Medical aid in dying is authorized in nine other states and Washington, DC. It’s time for New York to join that list. 

Thanks for reading to the end. What you do in 2022 matters. I hope you’ll look at the evidence, who’s lined up for and against this bill, and the impact failing to act has. And, if you’re not already a bill sponsor, I hope you’ll contact Assemblymember Amy Paulin or Senator Diane Savino today to add your name. 

Have a good week, 

Corinne