Bruce Kramer sets his sights on a 'good death'

The death of 29-year-old Brittany Maynard, a terminally ill woman who chose to take a lethal dose of medication prescribed by a doctor, has sparked a national discussion about the right to die according to one's own wishes.

One person who is not questioning Maynard's decision is Bruce Kramer.

"I don't think it's appropriate for me to second-guess another person's pain," he said, "another person's sense of how they want to do their own ending."

For nearly four years, Kramer has lived with amyotrophic lateral sclerosis, or ALS — a condition also known as Lou Gehrig's Disease. He has shared his journey in more than two dozen interviews with MPR News.

Kramer and his wife, Ev Emerson, know that he is dying — whether from ALS or one of its complications. He has faced the same question that confronted Maynard. For Kramer, the answer is hospice care.

Hospice is an end-of-life care philosophy that came to the United States in its modern form in the early 1970s. It focuses on managing pain and other discomfort, while also attending to the spiritual and emotional needs of the dying patient.

"It in many ways is the ultimate control, to say that this is the way that I want to go when that time comes," he said. "We all are going to die. Why don't we approach it as the gift that it is? The opportunity to ... summarize the lives we've been given?

"And so Brittany Maynard has made a choice and I think she's made that choice because she feels she has no other choice. I'm sorry for that ... not because I think she's wrong, but because it seems to me that that's symptomatic of a society that doesn't know how to do death."

Maynard was given little time to live after being diagnosed with an especially vicious form of brain cancer. She decided to die before she became incapacitated, because she felt she would suffer — even with hospice care — for weeks or possibly months, while her family watched her agonizing decline.

Kate Cummings, the director of Fairview Hospice and Palliative Care programs, says patients can be specific on what kinds of care they'd like while they are dying. They can address how they want to handle pain or breathing problems. But the focus is on comfort, not on prolonging life.

"It is really important to identify what are those components ... that are really going to be benefiting that person's comfort," she said, "versus extending one's life or causing greater burdens."

For example, she said, a patient might complain of a lack of fluids and ask for an IV. "Well, IV fluid isn't necessarily going to be helpful, because what it's going to do is cause more fluid in the lung, it might cause more fluid in one's extremities," she said. Such an approach might "just create more problems. So then you try to chase it maybe with another medication or something."

Patients who are facing death can be in hospice for up to six months, but may cycle in and out for a year or more.

"When we met with the hospice people," Kramer said, "I made sure I asked them: 'Now, if I'm not dead in six months, does that mean you have to kill me?'"

His sense of humor is one faculty that has remained intact as ALS lays waste to the muscles that once helped him move and swallow. Now in the latter stages of ALS, Kramer breathes with the help of a BiPAP machine. And he has begun getting hospice care at home.

He described the start of hospice care as "not a big change for me."

"Their focus is comfort and living well until you're not going to be alive anymore," he said. "Well, that's been my focus for four years."

"But I do have to say that by getting hospice involved with us, we both feel like it has added a certain level of organization and just a sense of control back over the way that we're doing things," he said.

"It also means that there are certain things that just become a lot easier," Kramer said. "If I need something medically, I call hospice. Hospice takes care of it. If I need a certain medication, hospice delivers it. If I need to consult about a certain type of procedure, hospice takes care of that."

Kramer acknowledged that his impending death "feels like loss, and it feels like sorrow. And it is. But it's also great joy." He compared his vision of the end of life to fireworks. "You know, you shoot the rocket into the air and you anticipate and then boom, it's this beautiful sparkle and then it's gone."

Kramer said he thinks people put off hospice care because they find it difficult to face what's coming. Also because they have come to regard hospice care as a sign that the end is near.

"In some ways, yes, it does mean that," Kramer said. "We've known that from the beginning, right?"

"I have a nurse friend who works in one of the local hospice facilities," he said. "And their facility is 99 percent occupied. And the average stay is two days.

"It tells me that people really aren't thinking about this. They just don't believe that death is going to be a part of their lives.

"I've been given the great gift of knowing that it is a part of my life. And that I need to be aware of that and I need to live with that fact ... By making the decision to go into hospice, we also felt that we wanted to get into it early enough on that they could help us to manage not just the life that I'm living now, but the death that I want to have.

"I want a good life and I want a good death."