No one has visited. He has no family to make decisions for him, at least none that he is in touch with. There is a brother, many miles away, who has his own problems, has little to say about what we should or should not do for this frail, very ill old man in the hospital bed. He has a sister, but he doesn’t want us to call her. He is estranged from his children. It seems there is no one but his caregivers to help figure this out. The first time I spoke to him, more than a week ago, he just wanted to be allowed to eat. He was sitting up then, a bit more alert, a bit more aware that he had options about his care. All he wanted was a cup of coffee and a sweet bun.
But his nurse objected. He had in fact failed his swallow test and would likely aspirate–bring food into his lungs and develop pneumonia–the same event that brought him to the hospital in the first place. To me, at that time, he seemed to be saying: OK then, it’s worth it, I’ll take my chances. Let me eat. He was clear that he didn’t want a feeding tube. His caregiving team was divided on the issue. Even those of us who wanted to let him eat knew that he would choke and develop the pneumonia that was likely to be his last illness, the old man’s friend. There was a standstill for almost two weeks, he was slowly starving, becoming weaker and more confused. Then finally he agreed to have a naso-gastric tube inserted to bring nutrients from a bag hanging above him into his stomach. Because he tried to pull out the tube, for several days his hands were tied with soft restraints to the bed sides, but eventually he was freed to pull it out or not, as he would. We were trying out best to keep him comfortable. Today he gently played with the tape holding the tube in place along his nose while we conversed. But not surprisingly, he seemed to have aspirated again. Medical care simply wasn’t helping, he was struggling to breathe and clear his lungs, hanging on for something, but what? Wistful, he talked about food and getting out of the bed into the chair again.
Now he says when I ask him what we should do, what we should stop doing, where he hopes to go from here, is this: Just help me.
At the end, there were no tubes, and although we gave him morphine, his breathing remained labored. He died. Alone in that bed.