Louise lives in New York, where a Death with Dignity law has not yet passed. After experiencing the peaceful death of her mother in California, she is sharing her mom’s story to advocate for expansion of Death with Dignity laws nationwide.
My mother, Leny, passed away on March 21, 2023 using California’s End of Life Option Act.
She died the way she lived, bravely, in control, and making sure her children were taken care of.
My family immigrated to the U.S. from the Netherlands in 1957, with a trunk of belongings and a hundred dollars to our name. My parents learned English, worked incredibly hard, and gave us the best life possible. My dad earned a Master’s in geography, after working his way up as a translator and factory manager. We bought a charming house – the same house where my mother eventually took her final breaths.
My father died two decades ago after enduring a feeding tube for two years, my mom serving as his primary caregiver. After this experience, she immediately changed her medical orders to avoid a similarly prolonged and painful death. Specifically – in all bolded caps – she gave the absolute order for no artificial hydration or a feeding tube.
Mom had Crest Syndrome, an autoimmune disease that among other things, destroyed her esophagus and other vital organs for the last twenty years of life. In January 2023, her condition took a spiral and she became very ill. While in the hospital we were told that Mom needed a feeding tube for two weeks only – “a bridge” – one meant to increase her strength for surgery. Ultimately, the efforts were wasted, as she never got that surgery. She ended up in the exact situation she hoped to avoid, reliant on a feeding tube 24/7.
Taking Back Her Power
Mom wasn’t having it. She called me in New York and asked me to come to California to immediately help her get the feeding tube removed. After the removal, the hole didn’t close, causing major abdominal burns from the acid pouring through her stomach entry point. Her pain was excruciating, and shortly after enrolling in hospice, she asked the surgeon to withhold food and water to speed up her death. In search of other options, we looked into Death with Dignity, which turned out to be a huge relief for mom once she understood the process.
From then on, my mom’s outlook changed. She focused on living, saying goodbye on her terms, and, most importantly, staying in her home.
From her initial verbal request, advocates from End of Life Choices California helped us move things along quickly, and it was generally a smooth process to qualification.
We brought out our entire family, including her six grandchildren. The goodbyes were said a week before she passed, and everyone left except my brother, myself, and our spouses.
Calling the Shots
Mom had always said she wanted to die in her chair at home. She was adamantly against a nursing home or being connected to a feeding tube 24 hours a day. Her social life revolved around entertaining and food! Now, she could no longer cook, drink, or even eat. She was ready.
Mom chose 10am on Tuesday, March 21. As part of the process, she was given anxiety and digestion medication an hour before she could take the cocktail. I asked her if she still wanted to do this and she said yes. I told her she had one hour to change her mind. We spent the next hour reminiscing and holding her hands. Trying not to cry. She was strong and ready. At 10am, she told us, “I am ready.” She drank the few ounces of aid-in-dying medications like the champ that she was, and within three minutes (or less) she was asleep. Within 15 minutes, she was gone. She simply closed her eyes. There was no struggle and clearly no pain.
For me personally, it was very difficult to watch her die. But, mom went the way she wanted to go.
Medical aid in dying allowed her to die how she always imagined – at home, surrounded by her family, free of pain and hospital discomfort, and in that designated chair.
Without Death with Dignity, this would not have been possible.
Witnessing the starkly different deaths of my parents, I cannot imagine why we continue to restrict terminally ill patients from this healthcare option. My dad died in immense pain. It took years of withering away and created trauma for all of us. Losing my mother was the worst thing that ever happened to me. But, her death was bearable because of how peaceful and autonomous it was.
Mom had a wish, and she fulfilled it. As a New Yorker, without the freedom to make the same healthcare decision, I am advocating in her honor. I want more families in states that have not legalized this compassionate option, to understand what we lack. I believe in strength in numbers. Please join me in sharing your story too.