For nearly a decade, almost every time my husband, Teddy, went into the hospital, they asked if he had an advance directive. And he did: It was notarized and given to any doctor he saw and any hospital he visited, including the one he died in.

But on the last day of Teddy’s life, the interventions he received were explicitly against his wishes as documented in his advance directive: no resuscitation, no intubation.

My husband was clinically dead when they started the CPR and intubation. There was no coming back to himself. So why were his wishes not honored?

I’ve since learned that what Teddy experienced is not that unusual in a health care system that prioritizes aggressive treatment above all else, including patient directives. I see this model reflected in news outlets focused on health and health care. The voices featured there are much more likely to be doctors than patients. But patient voices matter, too, especially when it comes to end-of-life care.

For the last seven to eight years of Teddy’s life, he was in ill health, dealing with COPD, two heart attacks, atrial fibrillation, and kidney problems. We had long discussions about what kind of end-of-life care he wanted. He didn’t want to be hooked up to machines. He didn’t want artificial nutrition. He didn’t want to be intubated. He wanted comfort care, and when it was time for him to go, he wanted to hold my hand. He felt secure knowing that he had his advance directive in place and that he and I had talked about it.

On February 13, 2024, Teddy fell and broke his hip. We went straight to the hospital. Although surgery was successful, a day later things started to change. His breathing was labored; he was struggling. At that point a bunch of respiratory staff came in, and, feeling like I was in the way, I left.

In the middle of the night, I got a call from the hospital that they had intubated Teddy. They said it was only temporary. I said, “OK.”

When I went back to the hospital in the morning, they had removed his breathing tube as expected, but Teddy was angry he had been intubated. It broke my heart that he felt let down by me, his health care proxy. At my sister-in-law’s suggestion, I confirmed with his case manager at the hospital that they were in possession of his advance directive, and I provided new copies as well. I thought that would matter.

The last time I saw my husband was February 24. That afternoon, shortly after coming home from the hospital, I received a call that Teddy had been coded and they were intubating him again. I said, “Tell them to stop it!” I rushed back to the hospital so I could see Teddy and say my goodbyes. When I arrived, he still had the tube in his throat and mitts on his hands to prevent him from yanking out a nasogastric tube.

Today, I tell people that I’m grieving two losses: I grieve the loss of my husband of 58 years, my best friend, and the father of my children. But I also grieve the loss of the ending Teddy wanted. He just wanted to hold my hand and go. He wasn’t allowed to do that.

I understand now that on their own, advance directives are not enough to ensure someone has the end-of-life experience they want. That requires having ongoing conversations with health care providers. But the burden should not be on patients and their proxies to be heard by the medical professionals caring for them. Hospitals and health care workers need a dramatic reorientation, one that prioritizes patient-directed care and preemptively familiarizing themselves with their patients’ wishes.

Teddy and I had no idea how naive we were to think that his health care providers would not immediately jump to unnecessary or unwanted interventions and invasive procedures, given his explicitly stated wishes. I imagine many other baby boomers are like us, unaware of all that’s required to get the care they want at the end of their lives.

I’ve learned a lot since Teddy’s death, but nothing I’ve learned will give me and Teddy the final goodbye we should have had. It should not be too much to ask that medical professionals listen to what their patients want and respect, not blatantly disregard, their wishes. We all deserve that.

Susan Hatch is a retired certified nursing assistant and medical office manager from Dover, New Hampshire. After her husband, Clifton “Teddy” Hatch, was intubated and resuscitated despite explicitly stating in his advance directive that he did not want these interventions, she began advocating for stronger patient-directed care in hospital settings and for broader education on end-of-life planning.