On the morning of May 19, 2024, my 74-year-old mother was struggling to breathe at her home in Bastrop, Texas. I called 911, an ambulance arrived, and my mother was transported to a hospital.

What followed was a devastating series of miscommunications and ignored directives that led to unnecessary suffering for her and profound trauma for our family.

A clear directive

My mother’s end-of-life wishes had been clear for a long time: She did not want to be resuscitated. Years earlier, she had faced the difficult choice to remove her parents from life support, and throughout our lives, she let us know that she did not want our last memories of her to be her being kept alive by machines, or for us to have to decide to “pull the plug.” She said that when it was her time to go home to heaven, she wanted to be allowed to go.

I thought my mother having a DNR, and us having talked about it, would be sufficient to ensure she did not have to suffer at the end of her life in the way she feared. I had no idea what we were up against that day she was rushed to the hospital for the final time.

In the ER, I spoke with my mother’s nurse about her medical history. He asked, “What is your mother’s code status?”

“DNR,” I replied, and watched him document it on my mother’s chart before he walked out.

The hospital emergency

My wife and I stayed with my mother until my brother and his wife arrived. With only two visitors allowed in the room at a time, we stepped out of the ER to allow them some time with her.

We returned to the waiting room as they were stepping out to swap places with us; however, we saw hospital staff urging them to hurry back, as there had been another emergency. We were all rushed down the hallway to our mother’s room, where we saw multiple people performing CPR on her.

Her arms were dripping with blood, her eyes and mouth wide open.

The trauma and shock of what I saw left me paralyzed. Before I knew it, the CPR was over, and my mother was intubated, her worst fear.

The administrative failure

When I pulled myself together, I asked the charge nurse why my mother’s DNR was ignored. She told me that there had to be a document on file obtained by “registration.”

I had been in the hospital with my mother for five hours at this point.

No one mentioned registration to me or asked for any physical documentation of her DNR. I explained this to the charge nurse, who told me there was not anything she could do about it because that was their policy.

We then learned from a cardiologist and pulmonologist that my mother’s liver and other organs were now damaged beyond repair because of the lack of oxygen she had sustained. They also informed us that they had given my mother drugs to keep her sedated because the intubation was very uncomfortable.

Ultimately, that day my brother and I had to make the very same decision my mother had made years before, the one she had tried so hard to prevent us from having to face. For seven minutes following my mother’s removal from life support, my brother and I sat beside her playing her favorite song: “Lord I Am Coming Home,” by the Statler Brothers. We watched our mother’s respiration slow while her mouth gasped for air. At 5:27 p.m., as the song ended, so did her life.

A systemic problem

Losing my mother was hard enough, but having directives ignored was something else entirely; it was devastating. I will always know that she suffered, and that knowledge sits heavy in my heart. It should not have been that way. Miscommunication, confusion, and a rigid hospital policy prevented her wishes from being honored. Why did anyone not tell me that saying “she has a DNR” was not enough? How was I supposed to know that paperwork mattered more than her voice, more than her clearly stated wishes?

I have since learned that what happened to my mother is not rare. Families all over the country face the same heartbreak, thinking their loved one’s wishes are protected, only to find out too late that they are not. When hospitals treat end-of-life directives as just another form to file, real people suffer. Patients lose control of the one thing that should belong entirely to them: how they leave this world.

The problem is that a medical system that requires aggressive advocacy from patients to get the care they want is a flawed system.

Patients should not have to fight to be heard in their final moments. Doctors, nurses, and hospital leaders have to do better. They have to start with the most important questions: What does the patient want? What do they need to know to make sure their wishes are honored?

If these questions became fundamental to the work of our health care providers, maybe no one else would have to suffer through the agony my mother did due to an ignored DNR, or carry the heavy heartache that our family does now.

Amanda Cutshall is a patient advocate.