Choosing Where to Die—A Long-Term Care Ombudsman Story

I received an urgent request to visit a resident who had called the long-term care ombudsman hotline, reporting that he had not been fed for over 24 hours.

When I arrived at the facility, I met a man who was alert and oriented, though visibly ill and short of breath. He told me he had been transferred the afternoon before from the Medicare wing to the long-term care wing. All of his belongings—clothes, personal items, everything—were stuffed into black trash bags piled in the middle of his room.

I went to the nurse at the medication cart and asked why he hadn’t been fed.

She looked at her medication administration record and said, “He’s not on this wing.”

“Well,” I said, “he’s physically in the room right behind you.”

That meant he hadn’t just missed at least three meals—he had also missed his medications and nebulizer treatments.

I spoke with another staff member and explained that the resident had not been fed for three meals. She said she would “look into it.”

I returned to the resident’s room to address other concerns he had raised, including his belongings still sitting in trash bags on the floor. Then I went to the dining room to see if I could find someone to bring him a meal.

It was closed.

I made my way back to the staff member who had said she would look into it. She was sitting at her desk, eating lunch.

“You didn’t get food for the resident,” I said.

“Oh yeah,” she replied. “I’ll get to that.”

“Well,” I said, “I’ll just sit here and wait until you do.”

I took a seat.

She stood up and went to get him lunch. While she was gone, aides came into the room and put his belongings away.

I visited him two more times over the next couple of weeks. He was not happy. He was increasingly short of breath. He had no family he wanted me to contact.

He was a highly educated man with a successful career. Why he was estranged from his family was never discussed.  

On the final day I visited, he called me directly from his cell phone.

When I arrived, he was gasping for breath. I sat on the edge of his bed and asked what I could do for him.

“I’m dying,” he said. “I wish it weren’t going to be like this, but I’m dying.”

I asked again what I could do.

“I don’t know,” he said.

I asked what he wanted to happen if he quit breathing. He told me he didn’t know what they planned to do.

At his request, I stepped out to speak with the nurse and asked about his code status.

“He’s DNR,” she said.

I told her how bad he felt—how short of breath he was, how he was gasping.

“Well,” she said, “there’s nothing I can do. We could maybe call hospice and see about getting some comfort care started.”

I went back to his room and sat on the side of his bed. I told him that according to his chart, he was Do Not Resuscitate. I asked again what I could do.

He placed his hand on top of mine.

His hand was ice cold.

I put my other hand on top of his, and he placed his other cold hand over both of mine.

“Your hands are so warm,” he said.

“And yours are cold,” I said.

“I wish it weren’t like this,” he said again.

I asked once more what I could do.

“I know I’m going to die,” he said. “I just don’t want to die here. I don’t want to die here with these people. I know they don’t care.”

I agreed. Their actions had already made that clear.

“Where do you want to die?” I asked.

“At the University Hospital,” he said.

“You have a phone,” I said. “You can call 911. You are critically ill. When the paramedics arrive, tell them you want to be transported to the university hospital, where your doctors are.”

He didn’t hesitate.

I called the facility the following day to follow up. A staff member asked me if I could believe he had called 911. She told me the University had placed him in hospice, and because his death was thought to be imminent, they were keeping him there.

And while I wouldn’t call it a happy ending, it was something.

He did not die hungry. He did not die unheard. He did not die where he believed no one cared.

He made a decision.

In a system that had stripped him of his medications, his meals, and his dignity, he still retained one thing: the right to make a phone call.

As an ombudsman, I couldn’t cure him.

I couldn’t undo the neglect. I couldn’t make the people around him kinder.

But I could sit with him. I could tell him the truth. And I could remind him that he still had a voice.

To protect resident privacy, identifying details in this story have been changed. The situations described reflect real issues encountered in long-term care.