When I sat down to write this week’s reading list post, I had a few articles in mind to share. They all seemed to converge on themes related to life, aging and dying. However, one particular article stands out as overpoweringly earnest. I want to give it the treatment it deserves.
In graduate school we had ethics assignment to consider difficult medical decisions including assisted succeed. We watched The Sea Inside, a fantastic, moving spanish dramatization of the life, and ultimately death, of Ramon Sampedro.
A few months ago I watched the documentary How to Die In Oregon and found it powerful and thought provoking.
The most common thought I have, when I read about or watch something related to end of life decisions, is: will my thinking change if I am actually confronted with an end of life scenario?. If…well, when… I ever have to face those choices for myself, will my current resolve give way to different feelings? If I ever have to help speak for a family member or, heaven forbid, act on their wishes, will I behave differently than I expect to?
End of life wishes and the discussions around them are not easy things to deal with. For starters, there’s the taboo many of us have where talking about death may —through magic? —lead to death itself. So let’s just not broach the subject, ok?
When we get past some of those fears, we start to think about what we would want. Would we want a feeding tube? Where would we like to spend our final hours, at home or in a hospital?
But the truth, the reality which is even more difficult than pondering the questions, is we have no idea how we’ll react, until we have to.
Last week, Joanne Kenen shared at link to an article by Robin Marantz Henig in the New York Times Magazine. The article, A Life-or-Death Situation is about bioethicist Peggy Battin and her husband Brooke, an English professor.
— Joanne Kenen (@JoanneKenen) July 21, 2013
Together, Peggy an Brooke Battin wrestle with their own beliefs and wishes every day. Sometimes, they change by the hour.
What I find so moving about their story is the multiple truths with coexist in their relationship. You can want to live and be tired of an unpleasant existence at the same time. You can be resolute in your thinking and understandably flexible at the same time. We can be both clear and confused, strong and conflicted, hopeful and scared, all at the same time. And the truth is, none of us knows exactly how we’ll feel one any given day, until that day comes.
Here are some of excerpts from the article which stuck with me:
At the heart of [Peggy’s] argument was her belief in autonomy. “The competent patient can, and ought to be accorded the right to, determine what is to be done to him or her, even if … it means he or she will die,” she wrote in 1994 in “The Least Worst Death,” the third of her seven books about how we die.
That’s the way she saw it after Brooke’s accident too, but with a new spiky awareness of what it means to choose death. Scholarly thought experiments were one thing, but this was a man she adored — a man with whom she shared a rich and passionate life for more than 30 years — who was now physically devastated but still free, as she knew he had to be, to make a choice that would cause her anguish.
“It is not just about terminally ill people in general in a kind of abstract way now,” she wrote after the accident; “it’s also about my husband, Brooke. I still love him, that’s a simple fact. What if he wanted to die? Can I imagine standing by while his ventilator was switched off ?”
Brooke has good days and bad days. When friends are around playing blues harmonica or reading aloud to him, when his mind is clear and his body is not in pain — that’s a good day. On a good day, he said, he feels even more creative than he was in his able-bodied life, and his relationships with Peggy, his two stepchildren and his many friends are richer and more intimate than before; he has no time or patience for small talk, and neither do they. Every so often he’ll turn to Peggy and announce, “I love my life.”
The tangled, sometimes contradictory nature of Brooke’s feelings has led to subtle shifts in Peggy’s scholarly thinking. She still believes that, whenever possible, people have the right to choose when and how to die. But she now better understands how vast and terrifying that choice really is. “What has changed,” she told me, “is my sense of how extremely complex, how extremely textured, any particular case is.” This realization is infinitely more fraught when you’re inextricably invested in the outcome and when the signals your loved one sends are not only hard to read but also are constantly in flux.