Jonathan Partridge is a television producer in New York City.
I am a proud New Yorker and I always have been. That is, until I found out that lawmakers in my state did not support death with dignity. This end-of-life option would have provided great comfort to my mother who died two months ago after a lengthy illness.
A Woman Who Embraced Life
Before she got sick, my mom, Marcia Partridge, loved her life. At age 69, she went to Jazzercise five times a week, enjoyed dinners with friends, continued her speech pathology career, vacationed around the world, and adored the love of her family. She could light up a room with her smile. It was impossible not to love her.
The First Diagnosis
Marcia was diagnosed with Stage 2 breast cancer in 2010. She had more than 40 lymph nodes removed. Fortunately, her cancer never metastasized and she eventually joined the “Survivor’s Club” in 2015.
It was a milestone when she hit that five-year mark. We all were excited about the future. We didn’t know that her years with breast cancer would be a walk in the park compared to what came next.
A New Normal
In 2016, Marcia was diagnosed with a non-Hodgkins lymphoma, called Waldenstrom macroglobulinemia. Her condition worsened quickly and she was admitted to the hospital for 35 days. Due to the thickening of her blood, she lost her hearing, eyesight, dexterity, and vestibular functions. The only treatment that worked for her was intensive chemotherapy.
After a few months, she started regaining her eyesight and hearing. But her balance was still off; she wavered and struggled to walk in a straight line. As a former dancer and very active woman, this was extremely hard for my mom. She had to accept that living with a compromised body was her “new normal.” She grieved her old self. And we did too.
My Mom’s Showrunner
I didn’t know that my work as a television producer would prepare me for helping my mother during her illness. When I was in between jobs, I essentially became my mom’s “showrunner” and along with my dad and sister, I was her full-time caretaker. I cooked food, shopped for essentials, extensively researched her illness, and motivated her to keep fighting.
While my mom’s condition gradually improved, she unfortunately needed to get a malignant node on her lung removed the following year. The surgery was a success and we thought we could breathe easy again.
An Uphill Battle
But shortly after, in the summer of 2017, my mom’s Waldenstroms had returned. So as a family, we went through the whole process one more time. Early 2018, after the chemo for her relapse was complete, my mom was diagnosed with a very rare immune disorder called Hemophagocytic Lymphohistiocytosis or HLH. This disease wreaked havoc on her body, resulting in my mom sleeping more nights in the hospital than she did at home.
By September 2018, I found myself wondering when this vicious cycle would end. I never gave up hope, but it became harder and harder to believe that she could recover from such a prolonged period of serious illness. This petite but strong woman fought breast cancer, blood cancer, lung cancer, and now this immune disorder. It was an uphill battle, to say the least.
Death with dignity is having the option to decide your own fate, to take control of your life and your death, and to leave this world with your true self intact.
The Ultimate Decision
On September 21st, I spent my 40th birthday with my mother in the emergency room after she fell and fractured her tailbone. That day, I had no idea that my mom would never return home.
“Hospice” was a dreaded word in our family, because no one was ready to commit to that option. We always took it one day at a time. Because my mother was a fighter, we thought she would recover, even though the magnitude of her frailty and suffering was impossible to ignore. It was only halfway into her month-long hospital stay when the word “hospice” became less taboo.
One night she said to me, “Jonathan, will you tell me when you think it’s not worth pursuing additional treatment anymore?” I agreed that I would, but I also dreaded the prospect of having to make that decision about her care.
The next day, the doctors came in and said she had a “bad pneumonia.” Our hearts sank. My mom called me the following morning and said that she decided to go on hospice. The only thing I could say was, “OK, Mom.” Looking back now, I’m thankful that she made that decision for herself.
“Let Me Go”
Since my mother’s oxygen requirements increased, we were told that she wouldn’t be able to go home. As such, hospice was never called in. Instead, she would be “kept comfortable” in the hospital with regulated painkillers until she would eventually pass away. We all said our goodbyes to my mom on a Wednesday, while she was still fairly lucid. The next day, she started deteriorating and began to respond less.
That night, my girlfriend and I stayed in the hospital room with my barely conscious mother, pressing the pain button every 15 minutes so she would be “kept comfortable” and wouldn’t feel anything. But this did not ease her suffering—or ours. My mom would wake up at times whispering, “Let me go,” and “I want to go to heaven to look over my family.”
It was the worst night of our lives.
In the middle of the night, we said our goodbyes once again. This happened every day until Sunday morning, when she finally passed.
Watching my mom like that for one day was torture. But seeing her in distress for four days was inhumane.
A Wish to Die with Dignity
Besides dying at home, my mother’s main wish was to die with dignity. I didn’t know what that meant. That night I went home and googled “death with dignity.” I discovered that this end-of-life option is available in only six states and Washington, D.C. Unfortunately and tragically, New York was not one of them.
My mom told us multiple times that she wished she had a quick and painless way to hasten her death. My mother should have had this option. Instead, she was deprived of the opportunity to die on her own terms.
The Celebration of Life event we organized for my mom was a testament to how many lives she touched. I never expected to see so many people attend to pay their respects and share memories of the vivacious and selfless woman she was for most of her life. But my final memories of my mom are of someone who was a shadow of her former self. That is not how I should have to remember this amazing woman.
A Right We Should All Have
I can’t imagine suffering the way my mother did. She lost her dignity long before she died. I want the ability to die with peace and dignity. It is a right we should all have.
I am committed to working alongside the Death with Dignity National Center to ensure all terminally ill New Yorkers have the right to decide how they die.