In March 2017, my sisters and I gathered in my mom’s bedroom as her pacemaker was deactivated by a hospice physician who was sitting outside her door. She died 18 hours later at the age of 90.
This end of life choice is something my mom, Margaret, had talked about for many years, and had included as an advanced health care directive written by her attorney. She had heart disease, which escalated the last few years into congestive heart failure, and had had a pacemaker for 26 years. Kidney disease afflicted my mom in her last year of life and escalated to Stage 4, but was not terminal. She had increasing mild dementia. She was resolved that she wanted to die.
“I am done, I am not doing this anymore!,” she would say.
My mom was living in her own home, and, by request, had been taken care of by five of her daughters around the clock for a year.
My mom was an accomplished watercolor artist, loved to sing to her grandkids, was liberal-minded, feisty, and more often than not, got her own way. From the beginning, my family respected her wishes and supported her choice. We saw it as a gift that we could give to her. It also ended up being a gift that she gave to us. The journey to that last day in March was long, challenging, and frustrating. Appointments with my mom’s general physician and cardiologist were disappointing, with no support or information about how we might proactively help her reach her goal and die with dignity.
The doctors wanted no part of this. Although the cardiologist had to know that the solution we were looking for was legal, he did not help us learn that. We did the research ourselves. Eventually we learned that U.S. courts have consistently upheld a patient’s right to refuse ongoing treatment.
Because we didn’t know where to start, we spent weeks looking in the wrong places. My employer was the medical device company that manufactured my mom’s pacemaker, and yet conversations with professionals yielded no information about the legality of deactivation. I suspect they did not want the company or the product to be associated with this controversial topic.
I searched medical journals, and finally found an article presented at a 2010 Heart Rhythm Society Conference that examined the medical, ethical, legal, and religious aspects of deactivating a cardiovascular implantable electronic device. The article answered all of my questions except for one: who was going to perform this procedure?
One hospice group was interested in my mom’s case. The hospice staff was invaluable, providing consultations with a physician, chaplain, nurses, and social workers. Legal work was completed. The physician received instruction on deactivating a pacemaker from my employer, which involves reprogramming the unit to match the patient’s natural heart rate, so they die of the underlying disease.
Mom had been so frustrated, and tired of being unwell and uncomfortable. When we told her that it wouldn’t be long until she could get her pacemaker deactivated, she changed. She was calmer and happier. She finally would have control over her death.
The last few months were special. I loved being with her, and cherished every moment. We filled in coloring books and listened to music. My daughter and grandkids had quality time with her too. Everyone was happier.
The day before the deactivation was the most memorable day. The physician came to tell mom that she could have her pacemaker deactivated the next day. He asked if she was ready, and she resolutely said yes.
After the physician left, Mom was almost vigorous. She sang, danced, and laughed with us. She brought us into her studio to sketch a still life, then passed the canvas to her girls and we all painted one last time with her. We talked until late, and tucked her into bed.
The next morning, serene and quiet, she lay in her bed, surrounded by her girls. The chaplain blessed her, we said goodbye, and the physician
deactivated her pacemaker.
I expected her to die within an hour or so, yet she survived with a heart rate of 16 beats per minute for 18 hours. She had several fits and starts over the night, and watching and waiting was hard for everyone. She received prescription medications to keep her comfortable throughout the night.
When mom finally passed, I felt a mixture of sadness and relief. Afterward, I felt positive grief. Helping mom die on her own terms, with less long-term suffering, was comforting to me. I believe everyone should have this choice.