Research to reality, a life-and-death quandary

04/17/2014 4:53 PM

04/19/2014 5:30 PM

How to distill the lessons of life, love, death and dying, learned in the most intimate way, into a dinner speech?

That is Peggy Battin’s challenge as she prepares her address for next week’s 30th anniversary celebration of the Center for Practical Bioethics in Kansas City.

Its title is “Learning from Brooke.” That would be Brooke Hopkins, a scholar, vigorous outdoorsman turned quadriplegic patient — and Battin’s husband of 27 years.

She is a university professor of philosophy, whose work in bioethics has focused on choices to die for people with terminal illnesses and catastrophic injuries, or facing extreme problems in old age. She has supported “death with dignity” laws like those in Oregon, Washington, and Vermont and some European countries.

He was a charismatic English professor who had recently retired from the University of Utah when a cycling accident on Nov. 14, 2008, caused injuries that left him paralyzed from the shoulders down.

“What an irony, huh?” said Battin, when we talked this week by telephone.

She and her husband had spent more time than most on the subject of dying. Hopkins grew up in a religious tradition, Catholicism, which believes that actively hastening a death is wrong. Battin had watched her mother suffer from liver cancer and wonder, “Why should it be so hard to die?”

Hopkins had signed a living will specifying that he wanted no extraordinary measures to prolong his life in the event of a catastrophic, debilitating illness or injury. But due to a series of circumstances that included help from a trained flight nurse who came upon the scene of his accident and the fact that Battin, his legal surrogate, wasn’t with him when it happened, that decision initially was out of their hands. Hopkins was on life-sustaining technology by the time his wife got to the hospital.

And Hopkins was grateful. The flight nurse later told the family she wondered if she’d done the right thing by rescuing him. “She came to Brooke’s hospital room and he thanked her profusely,” Battin said.

In the months to come, Hopkins and Battin shared deep connections with each other, their family and friends. Hopkins taught literature to adult students. It cost a fortune and required round-the-clock care, but he was able to be at home.

But he was nearly always in pain and suffered repeated infections and illnesses. In the summer of 2012, he wrote an eloquent “final letter” to his loved ones, but ended up not sending it.

By last July, though, Hopkins, 71, had reached his limit. He asked his children and closest out-of-town friends to come to Salt Lake City. He told doctors he wanted all five of the medical devices that kept him alive to be disconnected. They carried out his wishes on a Wednesday afternoon. Hopkins died with the people dearest to him at hand, a gospel song on the stereo and his wife tucked in beside him.

He was able to die peacefully, on his own terms — just as Battin has long advocated for patients in certain circumstances.

But Battin, of all people, understands that life-and-death decisions are fraught with conflicts and ambiguity. Medical personnel give patients and families mixed signals. Loved ones don’t want to let go. Even she, after all her studies and intellectual wrangles, did not want to lose Brooke.

One of the books Battin wrote before her husband’s accident is titled The Least Worst Death.

We should think about that, she told me. “If we had our druthers, how would we want our life to end?”

Fighting all the way versus a gentle release. An unexpected ending versus time to say goodbye. These are individual decisions, based on life experiences and values. But if we think ahead about our own least worst death, we empower ourselves to arrange it when the time comes.

Battin will speak Thursday night at the anniversary dinner and next Friday at a symposium at the Kansas City University of Medicine and Biosciences. Details are at

PracticalBioethics.org

.

Hopkins was a revered and dedicated teacher. It is Battin’s challenge and privilege to communicate his most enduring lessons.

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