Lobby Day 2017 — Reflections

by Susan Harris, Ed.D.

Nearly one hundred of us from throughout the state, most in bright yellow Compassion and Choices t-shirts beaming our message, descended on the Capitol and Legislative Office Building on May 9. The momentum was unmistakable. I felt part of a powerful, articulate group of influencers who will eventually make a difference in the lives of so many New Yorkers and their families.

Lobbying for Medical Aid in Dying was my first experience lobbying for anything, but I felt comfortable and prepared. The previous week we had received training and watched as one of our own went head-to-head, practicing against the political acumen of a very sharp assemblyman. Corinne Carey and Amanda Cavanaugh of Compassion and Choices and Bonnie Edelstein and Jeff Baltes of Death with Dignity made sure we were well prepared and that everything flowed smoothly on Lobby Day. I’ll definitely sign up again next year. I encourage others who support our cause to take up the banner!

Victory may take a couple of years, as the bill has to get through the Health and Codes Committees before it comes to the floor. It isn’t, and it won’t be, easy; in fact, it’s a big lift. I learned that our job is to persist in educating legislators on the bill, persuading the undecided, debunking myths, and providing counter-arguments where necessary.I also learned that our most powerful argument is the personal and family story. Just about everyone has one, and it resonates. At the opening press conference, a young mother with terminal metastatic breast cancer pleaded for passage of the bill. A widow whose husband chose to end his suffering, albeit far from family and friends, in the compassionate state of Oregon, promised her beloved that she would fight for death with dignity in New York State. When a small group of us lobbied a legislator, sharing one of our personal stories in the privacy of his office, he shared that he had his own personal stories. He then offered to sub-lobby for our cause.

Attitudes toward illness, death, and dying have evolved over the last few decades. We are fortunate now to have the option of hospice and palliative care. As a society, we seem better able to accept death as a natural part of life; and better able to decline medical treatments when they no longer prolong quality of life, but instead protract the agony of death. I say this from a perspective of forty years, recalling a time when my mother was dying of colon cancer, when just mentioning the “C” word was taboo, when the doctor was dismissive and gave us no guidance in how to handle “it” or her. My dad and I were in denial, even when my mom forthrightly asked us, “Am I dying?” I wish our family could have faced the truth, revisited the good times with her and had had a chance to say our good-byes. Instead, my mom suffered psychologically alone, while my dad and I stood cluelessly and helplessly by her side. I believe she would have wanted to know her medical prognosis; she would have wanted to talk openly with us about her feelings and ours; she would have wanted to participate in, if not direct, her own plan for end of life, and would have wanted to be kept comfortable as long as she had some remaining quality of life. When that was gone, she would have wanted the choice to die with dignity, free from pain. How would I know? From her living hell, she had just enough breath to reproach a system she felt had abandoned her: “They shoot horses, don’t they?”

As a society, we’ve come a long way on the road to compassion when it comes to managing death and dying…but not far enough. It was significant for me that we lobbied the legislature on May 9, the Tuesday before Mother’s Day. I, and we, will continue to lobby, until New York joins the six pioneering states that have already legalized Medical Aid in Dying and until New York State has said “yes” to freedom of individual choice!