Contemplating Brittany Maynard's Final Choice

By Nancy Shute

Published November 3, 2014 at 12:57 PM EST

Brittany Maynard was a beautiful anomaly.

Most 29-year-olds don't get incurable brain cancer. Most young cancer patients don't choose assisted suicide when given a terminal diagnosis, or decide, as Maynard and her husband did, to pack up and move to another state so she could have that choice.

And Maynard also decided to let the world in on her excruciating choice, opening herself and her family up to criticism at a time when that's the last thing they needed.

Since news of Maynard's decision first surfaced, I've been thinking a lot about what I would do if I got a terminal diagnosis, or if someone I love does. I don't know. But American health care often does a spectacularly bad job of caring for people as they're dying. And as Dr. Atul Gawande points out in his new book, Being Mortal, young patients like Brittany are most likely to be given the "live longer at any cost" approach:

Younger people are much more likely to get aggressive therapy till the end, have much more suffering at the end, and have their families experience PTSD and depression after their passing.

In part, that's because it's such a violation that any young person should die. It's hard to back off the goal of trying for more time no matter what, towards insuring as good a life as possible in the time we have remaining with them.

Maynard's husband and family seemed in unison in trying for "as good a life as possible" in her final days. But I can imagine struggling with it if my mom said she wanted to make an early exit. That's what happened to Emily Bem, whose mother, a psychology professor diagnosed with Alzheimer's, told the family she planned to commit suicide before she lost the ability to think. My NPR colleague Alix Spiegel told the family's story:

They settled on Tuesday, May 20, and announced the date to the family at a meeting at their home in Ithaca.

And even though Emily Bem had supported her mother's decision, this date — the cold reality of it — was very hard to accept.

"I said she seemed too well and it seemed too soon. I felt really angry. I felt they were all wrong," Emily says.

Ultimately what made it possible for Emily to accept her mother's choice was a get-together for family and friends with her mother.

"It was just so obvious that this is about as good as it gets for a human exit," Emily says. "She was surrounded by everyone who loved her, they were telling her how and why they loved her. This was not a bad way to go."

The people who choose assisted suicide are typically much more like Emily's mother than like Brittany — they're older than 65. They also tend to be white, well-educated and to have put a great deal of thought into their choice. And most who ask about the option don't follow through in the end.

Indeed, a study published last year in the New England Journal of Medicine found that just 16 percent of 114 terminal cancer patients who had asked about assisted suicide at the Seattle Cancer Care Alliance eventually decided to kill themselves. Only one-third filled the prescription. Most never continued beyond their first inquiry. "Qualitatively, patients and families were grateful to receive the lethal prescription, whether it was used or not," the study authors wrote.

The most common reason people gave considering assisted suicide was fear of a loss of autonomy.

If those numbers hold true, assisted suicide will remain the choice of very few people, even if it becomes legal in more states. And even people who decided in the end to make that choice don't say it's easy. Ethan Remmel, a psychology professor with cancer who died at age 41, wrote eloquently about the process, about his frustration that his family and doctors seemed to value quantity of life over quality, and about his grief at a life cut short.

Three days before he died, he wrote that he had come to terms with that loss:

Average survival time from my diagnosis is around two years. I will survive only about half of that. But I do not feel like a failure. I did the best I could with the time that I had. I may not look like a success as a dot on a graph, but I feel like one. Birth and death may not be pretty or pleasant, but we can still be proud of how we handle them.

Peace and love,

Ethan Remmel