Tara Shapiro

Tara shared her story in April of 2024.

Janice was constantly in motion. Moving, cleaning, organizing — my mother-in-law liked to have everything in her life planned and in its place. For 16 years, she raised her two children while running an ice cream store full-time, working long hours, hardly taking a vacation, just very dedicated to getting things done. But she also knew how to have fun. Towards the end of her life, she organized mahjong and canasta groups and had people coming over to our house six days a week. Although she was considered a master mahjong player, she was also happy teaching beginners how to play. She made everyone feel welcome. 

As for me, she was “Mom,” treating me like the daughter she never had; my three sons, her grandsons, meant the world to her. 

Janice had an autoimmune disease called inclusion body myositis (IBM), which left her with difficulty swallowing. Over a period of 10 to 15 years, she became gradually malnourished as she slowly lost the ability to swallow regular food. As a palliative care physician, I knew the repercussions of her going without a feeding tube, but she emphatically refused one. And when Janice made a decision, she was very steadfast in it. 

Different therapies recommended by Janice’s doctors were not as successful as she had hoped. Still, in spite of her IBM, COPD, heart disease and having suffered a stroke, she was a force to be reckoned with and worked harder than anyone to continue living as she always had. 

When Janice’s ability to walk abruptly decreased in April 2023, she enrolled in in-home care with United Hospice of Rockland. Hospice was imperative now that she could no longer get out of bed on her own and the risk for skin breakdown, sepsis, infection and aspiration had increased. My husband and one of our sons shared caregiving responsibilities with the hospice workers, and thankfully, Janice enjoyed the company of the staff.

In May 2023, one of my sons graduated from college in Binghamton, and Janice was not going to miss his graduation ceremony. So my husband and I took her with us on the drive upstate. After the ceremony, I got out of the car to run an errand, and when I returned, I found them both very upset, my husband in a cold sweat. I said, “I was only gone for 10 minutes, what did you guys do?” 

Mom had choked on her own mucus, and my husband had performed the Heimlich on her. 

Janice said, “If that ever happens to me again, don’t do that. Just let me go.”“We can’t do that,” I replied. “We can’t just let you choke. That’s a hard way to die.” 

About two weeks earlier, I had seen that the law in Vermont had changed to allow qualifying non-residents to use medical aid in dying there. So the day after we got home, I told Janice, “Listen, Vermont has this law,” and explained it to her. She said, “Absolutely, I want to do that.” I also told her about the option of voluntarily stopping eating and drinking (VSED), but she was not interested in that. Her skin was starting to break down. Her swallowing difficulties were continuing. She was in pain and losing the function of her hands, so playing canasta and mahjong had become very difficult. “I can’t do the things I want to do anymore,” she said. 

I let her know that we would have to make the four-hour trip to Vermont two times. She was still determined. 

I looked up hospice agencies in Bennington, which was closest to our house, called them up and explained the situation. They were very kind and accommodating. They put me in touch with one of the doctors for the VNA & Hospice of Southwestern Vermont, and we traveled up there for the initial visit with the doctor to confirm Janice met the criteria. 

Janice told me she wanted only me, my husband and our three sons with her the day she took her medication. 

On June 14, we traveled up to Vermont for the second time. The next morning, we had breakfast together. Janice had some ice cream, which she loved (and how could you not if you owned an ice cream store?). We watched silly movies and played “My Way” by Frank Sinatra, one of Janice’s favorite songs. 

Over the previous two weeks, my mother-in-law had been giving all her stuff away. That morning, she said, “I want you to take these pants and have them after I die.” I was thinking, “I’m absolutely not taking the pants off your dead body.” But I said, “Yes, of course, they’re lovely, sure, Mom.” She was being very, very practical, right to the end. 

There is one pharmacist in the state of Vermont who fills aid-in-dying prescriptions. He prepares the medication, hand delivers it to wherever you are in the state, and explains everything to you. It was amazing and helped me feel very confident about the process. After he had come and gone, Janice didn’t want to sit around and wait any longer. So each of my sons said some beautiful words and had some private time with their grandmother. I mixed up the medication, brought it in to her, and then the five of us gathered around her, holding her as she drank the medicine. She handed me the empty cup, and then she was unresponsive. She died there with us surrounding her. It was quick, and it was peaceful. 

We were thankful that everything went smoothly for Janice and that she got to have the end-of-life experience she wanted. That said, I know we all would have been more comfortable if we could have stayed in our own home. We would not have had to disenroll my 81-year-old mother-in-law from hospice in New York state and re-enroll with one in Vermont. We would not have had to find a place to stay. If medical aid in dying were available where we lived, we could have had the nurse Mom knew and loved, the social worker we loved, the priest my Jewish mother-in-law adored. Instead, getting Janice the end-of-life care option she wanted was a big strain emotionally, physically and financially. 

I’m Catholic, and my father was a deacon in the church. I understand the sanctity of life. I’ve also seen a lot of suffering and pain. As a palliative care physician, I’ve devoted my career to helping people not suffer, exploring their choices and meeting them where they are, and I believe no one should have to prolong suffering when the inevitable is happening anyway. Medical aid in dying is a safe end-of-life option, one we should have here in New York.