My View: The Right to Help in Dying

When my husband, Sid, was 60, he fell in a parking lot. He didn’t think much of it, but over the next few months his legs weakened and he fell more often.

We visited neurologists, orthopedists and internists who gave him MRIs, CT scans, spinal taps and psych tests. There was vague talk of “softening of the brain tissue at the cerebellum.” No one seemed to have answers until Sid was diagnosed with a progressive neurological disease, spino cerebella ataxia.

My able-bodied husband went from a cane to a walker to a wheelchair. He lost control of his bladder and bowel. He developed dysphasia; his food had to be pulverized and liquids had to be thickened. He had difficulty catching his breath. His arms atrophied.

Although there was no treatment and no cure, his incredible intellect and sense of humor never wavered. He did not want to die. He had two grandchildren whom he adored and wanted to dance at their weddings.

But after seven years of losing ground, Sid told me he had enough. He asked for my help to kill himself. I refused — the hardest decision of my life, and one that haunts me still. I extended his intolerable existence.

Sid decided that he would stop eating and drinking. As his body slowly shut down, he developed terminal agitation and his extraordinary hospice nurse had to lie on top of him because no amount of Haldol could control his outbursts.

My husband spent his adult life in recovery from alcoholism, anxiety and depression. He had joked that he wanted to know when he had three months to live so he could have some Johnny Walker Blue. His best friend, Mike, brought over a bottle, but Sid declined. He said he was proud of three things in his life: his daughter, his marriage and his 36 years of sobriety.

It took 12 days for my husband to die. He left on May 5, 2014.

Because of Sid’s unnecessary suffering — and the effect that suffering had on our family, a factor that is often overlooked — I advocate what has become known as medical aid in dying. Through that work, I met Laura Kelly, a Mount Kisco resident whose father, Larry, dying of colon cancer in 2015, asked for help just as Sid had. His death, like Sid’s, was unnecessarily traumatic.

The Medical Aid in Dying Act (A995/S2445) was first introduced in the New York Legislature in 2015. It would allow terminally ill, mentally capable adults with a prognosis of six months or less the option to obtain prescription medication they could decide to take to die peacefully if their suffering becomes unbearable. Although there are similar laws in place in 10 states, including New Jersey, the bill has never come up for a vote in Albany.

We are hoping that will change in 2024. Assembly Member Dana Levenberg, whose district includes Philipstown, is a co-sponsor of the bill, but please let Assembly Member Jonathan Jacobson, whose district includes Beacon, and Sen. Rob Rolison, whose district includes the Highlands, know that it deserves their support.