My Dad Had an Advance Directive. He Still Had to Fight to Die

My mom died peacefully. My dad died 72 days later, angry at the doctors for ignoring his wishes.
The high school sweethearts were always very clear about their end-of-life expectations: Quick and painless.
No one ever imagined a fight.
My parents met when they were teenagers in English class. He was the captain of the football team, and she was the beautiful nerd that he dated after he had dated everyone else (and she never let him forget it.)
They married and settled in the Twin Cities, Minnesota, to raise three kids.
When she was 31, my mom, a hard-charging stockbroker, became disabled by severe back pain. Meanwhile, my dad, a clinical psychologist, had several joints replaced because of severe arthritis.
We called him “The Terminator” because he was, as he put it, “darn hard to kill.” These ailments left both of them disabled but not dispirited.
As my parents aged and their health challenges became more significant, they never stopped loving and caring for each other. Because they were disabled for most of my life, there was nothing unspoken between all of us.
We knew that they did not want to suffer at the end of their lives. They wanted comfort.
My mom tested positive for COVID-19 on September 29, 2023. Two days later, she was admitted to the hospital. As she improved, I talked with her daily, and our marathon phone conversations covered everything from global wars to dinner plans.
Ten days after she was admitted, I missed a FaceTime call from my dad. He FaceTimed me again, and this time I answered.
“Your mom is dying,” he said. “You need to come home now.”
I fell to the ground.
I arrived in Minnesota five hours later, followed shortly by my brother and sister. Overnight, mom had contracted pneumonia, and her body started to shut down.
We stayed by her side for the next 36 hours, working around-the-clock shifts until she died. Her death was peaceful. She took a breath, and then… she didn’t take another.
After my mom died, my dad revised his will and completed an advance directive. He had major heart surgery scheduled less than three months later, and he wanted to be prepared.
While that may sound surprising, my dad was a detail-oriented pioneer in mental health care. He wasn’t going to leave his death up to chance.
Dad had heart surgery on December 20, 2023. An hour after the surgery ended, his vital systems started shutting down. A cascade of interventions, one after another, kept him alive.
Four days later, he said: “Put me on hospice.”
The doctor dismissed this request, rolling his eyes and saying: “Everyone on a ventilator says that.”
On Christmas Day, my father asked for hospice again. He was in pain. He knew his recovery would be long and ultimately futile. He would never have an acceptable quality of life again.
The next day, things took a turn for the worse. When I asked the nursing staff for a copy of dad’s advance directive, I discovered they did not have it.
I was shocked. I went to his house, retrieved his advance directive, and brought it to the hospital, where a nurse filed it.
On December 27, dad asked for hospice first thing in the morning. He couldn’t speak, but he could squeeze my hand when I asked “yes” or “no” questions.
Dad indicated to me that he did not want the treatment he was receiving. He was cogent and furious that his care team kept dismissing his request for hospice. I assured him I would advocate for him to be placed in hospice.
I told him: “It’s weird fighting for someone you love to die.”
He squeezed my hand so tightly I thought it might break.
From that moment on, it was a battle with the doctors.
I asked dad’s ICU doctor to remove his ventilator and other artificial means of keeping him alive. Reluctantly, the doctor agreed.
As soon as he could speak again, dad said: “I need to die today.”
The doctor said he needed to consult with his team. We waited for five hours.
Meanwhile, my siblings joined us in dad’s room. He thanked us for advocating on his behalf, and we promised we would fight for his right to a peaceful death.
Finally, three doctors joined us in the room. They argued that dad could recover from this, but it was clear that it would be a long and difficult road.
Alert, communicative, and clear, dad interrupted: “I want hospice. I need to die.”
The doctor ignored him and continued talking. My sister asked: “Can you hear him?” The doctor admitted that he couldn’t, so he moved closer to my dad. “Hospice,” dad said again.
The doctors pushed back, insisting that he could recover. Dad shook his head.
I asked if the doctors had read dad’s advance directive. Only one of the three had, and I was shocked. I immediately stopped the conversation and read aloud, directly from his advance directive, my father’s wishes.
As I was reading, dad gestured angrily, emphasizing everything that he had written down.
He said: “My body. My choice.”
Finally, the doctors agreed to place him on palliative care, which meant he would still receive curative treatment. He argued again, indicating he didn’t want palliative care—he wanted hospice, which focuses only on removing suffering in the final days.
He was of sound mind, and yet he was still being dismissed.
Dad’s care team insisted palliative care was the same as hospice care, but he knew the difference. He wanted hospice care. Finally, they reluctantly agreed and called for a social worker to make arrangements. It wasn’t necessary.
Once they removed his treatment and relieved his pain, he died five hours later.
The lessons I’ve learned from my parents’ deaths are both practical and painfully profound: Make an advance directive, physically hand it to your care team, and discuss it with them. Make sure your loved ones know your wishes. Choose empathetic doctors who will listen to you.
I filed a formal complaint with the hospital and never heard back.
The most profound lesson I’ve learned is that I’m actually not afraid of death. However, I am afraid of the suffering that will lead to death.
At 39, I’m the first one of my friends to lose both of my parents, but I won’t be the last. The American population is rapidly aging; by 2034, there will be more retirees than children in America, according to the U.S. Census Bureau.
Younger Americans must be prepared to care for our elders, navigate the healthcare system, and fight to ensure our loved ones receive the desired care.
It’s going to be painful. It’s hard. No one wants to have these conversations with your loved ones.
The only thing that made dad’s death easier was that he was very clear with his end-of-life expectations before he got sick, and when the moment came, he never wavered. He consistently asked for a painless, quick death.
I know my dad was grateful that we advocated on his behalf. If my mom had been alive, she also would’ve fought to give him a peaceful death as a final act of love.
Maggie Schneider Huston is a senior digital experience manager for UPS. She lives in Atlanta, Georgia.
All views expressed are the author’s own.
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