My father had a living will. He still had to fight for his death

My mother died peacefully. My father died 72 days later, angry at the doctors for ignoring his wishes.

The high school sweethearts were always clear about their expectations for the end of life: It should be quick and painless.

Nobody ever thought about a fight.

My parents met when they were teenagers, in English class. He was the captain of the soccer team and she was the beautiful nerd he dated after he dated everyone else (and she never let him forget it).

They married and settled in the Twin Cities, Minnesota, to raise three children.

At age 31, my mother, a hard-working stockbroker, suffered severe back pain and became unable to work. My father, a clinical psychologist, required several joints to be replaced because of severe arthritis.

We called him “The Terminator” because, as he himself said, he was “damned hard to kill.” These ailments left them both handicapped but not discouraged.

As my parents grew older and their health problems became more severe, they never stopped loving and caring for each other. Since they were disabled for most of my life, there was nothing unspoken between us.

We knew that they didn't want to suffer at the end of their lives. They wanted comfort.

On September 29, 2023, my mother tested positive for COVID-19. Two days later, she was hospitalized. As she improved, I spoke to her daily, and our marathon phone conversations covered everything from world 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 mother is dying,” he said. “You must come home now.”

I fell to the ground.

I arrived in Minnesota five hours later, followed shortly after by my brother and sister. During the night, my mother had contracted pneumonia and her body had begun to fail.

We stayed by her side for the next 36 hours, working around the clock, until she died. Her death was peaceful. She took one breath, and then… she never took another.

After my mother died, my father revised his will and drew up a living will. Less than three months later, he was due to have major heart surgery and he wanted to be prepared.

This may sound surprising, but my father was a detail-oriented pioneer in mental health care. He did not want to leave his death to chance.

Dad had heart surgery on December 20, 2023. One hour after the surgery, his vital systems began to fail. A cascade of interventions, one after another, kept him alive.

Four days later he said, “Take me to a hospice.”

The doctor rejected this request with a roll of his eyes and said: “Everyone who is on a ventilator says that.”

On Christmas Day, my father again requested hospice care. He was in great pain. He knew his recovery would be long and ultimately futile. He would never again have an acceptable quality of life.

The next day, things got even worse. When I asked the nursing staff for a copy of Dad's living will, I found out they didn't have it.

I was shocked. I went to his house, got his living will and took it to the hospital where a nurse filed it.

On December 27, my father asked about hospice first thing in the morning. He couldn't speak, but he could squeeze my hand when I asked “yes” or “no” questions.

My father told me he did not want the treatment he was receiving. He was convinced and angry that his care team kept denying his request for hospice care. I assured him that I would work to get him into hospice care.

I told him, “It's strange to fight for the death of someone you love.”

He squeezed my hand so hard that I thought it would break at any moment.

From that moment on, a battle with the doctors began.

I asked my father's intensive care doctor to take off his ventilator and other artificial life support. The doctor reluctantly agreed.

As soon as he could speak again, Dad said, “I have to die today.”

The doctor said he had to consult with his team. We waited five hours.

Meanwhile, my siblings came to my father's room. He thanked us for our efforts and we promised him that we would fight for his right to a peaceful death.

Eventually three doctors came into our room. They said Dad could recover, but it was clear that it would be a long and difficult road.

Attentive, communicative and clear, Dad interrupted: “I want to go to the hospice. I have to die.”

The doctor ignored him and continued talking. My sister asked, “Can you hear him?” The doctor admitted he couldn't hear him, so he moved closer to my dad. “Hospice,” Dad said again.

The doctors refused and insisted that he could recover. Dad shook his head.

I asked if the doctors had read my father's living will. Only one of the three had read it, and I was shocked. I immediately stopped the conversation and read my father's wishes directly from his living will.

As I read, Dad gestured angrily and emphasized everything he had written down.

He said: “My body. My decision.”

Eventually, doctors agreed to put him in palliative care, meaning he would continue to receive curative treatment. He again objected, stating that he did not want palliative care—he wanted hospice, which would focus only on relieving suffering in the final days.

Even though he was of sound mind, he was still released.

My father's care team insisted that palliative care was the same as hospice care, but he knew the difference. He wanted hospice care. Finally, they reluctantly agreed and called a social worker to make the arrangements. It wasn't necessary.

After they finished his treatment and relieved his pain, he died five hours later.

The lessons I learned from my parents' deaths are both practical and painfully profound: Create an advance directive, personally deliver it to your care team, and discuss it with them. Make sure your loved ones know your wishes. Choose compassionate doctors who will listen to you.

I filed a formal complaint with the hospital and never received a response.

The most profound lesson I have learned is that I am not actually afraid of death. However, I am afraid of the suffering that will lead to death.

At 39, I am the first of my friends to lose both parents, but I won't be the last. The American population is aging rapidly; 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 the elderly, navigate the health care system, and fight to ensure our loved ones receive the care they desire.

It will be painful. It's hard. No one wants to have these conversations with their loved ones.

The only thing that made my father's death easier was that he had already made his expectations for the end of his life very clear before he became ill, and when the moment came he stuck to them. He always wanted a painless, quick death.

I know my father was grateful that we stood up for him. If my mother had been alive, she would have fought for a peaceful death as a final act of love.

Maggie Schneider Huston is a Senior Digital Experience Manager at UPS. She lives in Atlanta, Georgia.

All views expressed are those of the author.

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