As death from ALS draws near, Kramer finds strength in choice

As Bruce Kramer nears the end of his life, he's pondering choices that, until recently, he didn't know he had.

Kramer, a former professor and college dean who has lived four years with ALS, has been in hospice care for several months. He and his wife, Ev Emerson, say the physical and psychological care given by hospice staff has been tremendously helpful.

"Making the choice of hospice for me has actually allowed us to focus on the way we live, and I think that is a marvelous gift," Kramer said. "There is research that says that people that go into hospice actually live longer, their families do much better afterwards. That by facing death and embracing death, you actually get to focus on life. And that to me is a tremendous gift. "That is how I want to die. I want to die fully alive."

Emerson said hospice staff "help us ask the questions that we didn't know we needed to ask. ... They presented us with some choices that we didn't realize were ours to make."

What sort of choices?

"I guess I always assumed that nothing would ever get better," Emerson said. "It would just get worse and worse and worse. And I would lose Bruce. Bruce would lose his voice. Bruce would end up choking, or I'd have to watch him not eating and starving to death or, you know, we'd have to go to the end with unbearable pain."

"Fear has been a palpable presence," Kramer explained. But now, "we've had the opportunity to talk and to liberate ourselves from that fear, because we are not powerless in this process."

"We have choices," Emerson said. "Bruce has choices that he can make so that it doesn't have to go to a terrible end."

The choices involve refusal of medical treatment. Kramer admits that he's being kept alive by an external ventilator, a BiPAP machine, that pushes air into his lungs through a tube in his nostrils. If he were to quit using the machine, he'd likely die in a few days.

If he decides he's reached a point where the pain and the losses are too much, he said, he may decide to stop treatment.

"It is my legal right," Kramer said. "It's also, as I see it, my moral right."

Kramer does not see such a decision as akin to suicide. Instead, it's a recognition that "at some point, it's just too hard."

"We're talking about basically saying that this body cannot survive without these treatments and the suffering is so great that all the treatments are doing is prolonging suffering," he said. "I think most people would understand that. And so, that is what I was afraid of. I think that is what Ev was afraid of, and I think if most people were honest with themselves, they would be afraid of that too."

Emerson has faced a similar situation before, when her 87-year-old father was dying of brain cancer. Some members of her family wanted him to push on and continue life-sustaining treatments.

She recalled saying to him, "I want you to know that when you are done, when you feel like you've had enough, I will support you in that decision." She described the experience with her father as "a holy time," and said she is willing to do it again:

"I told Bruce early on that I would walk with him to the end and when he decided he was done, I would support that decision." Kramer recently wrote about these issues on his blog, and quickly began hearing from people who inferred that his end was near.

"I thought it was necessary to clarify that he's not going anywhere, right now," Emerson said. "So I wrote a little on our CaringBridge website about how we're doing, and how he's not on death's door, but we have some idea and some sense of control on how we want things to end."

Kramer said he worries about the effect on his grown sons if he decides to stop treatment. "I don't want them to think that I gave up," he said. But he thinks his sons and their spouses have grown "immensely" during the course of his illness, and that "if and when we come to this point where I believe that it's time, then I think they know ... it is an act of love."

And at the end, he said, "what we will have left is love. Because love doesn't go away."