Friday, August 23, 2013

More goodbye to Brooke

NewYorkTimes 6thfloorBlog
AUGUST 21, 2013, 3:13 PM
Choosing to Die After a Struggle With Life
Peggy Battin and her husband, Brooke Hopkins, were the subjects of my cover story last month on decision-making at the end of life. Peggy is a philosopher known for her defense of people’s right to choose the manner and timing of their own death. Brooke, a former English professor, was paralyzed in a bicycle accident in late 2008 and held on to life with a vengeance for almost five years. On Saturday, July 27, six days after the article was published in print, he finally decided he’d had enough.
It was a decision that was building for a long time, but by the end of July, a constellation of things had removed whatever ambivalence he previously felt. One was that he had trouble over the summer teaching “The Tempest” to his adult-ed students and was certain that — he realized with a touch of irony — his plans to teach “Don Quixote” in the fall were illusory. Another was that he was having more difficulty expressing his thoughts. So two of the things that had made his life worth living — teaching and long, thoughtful conversations with Peggy and their friends — were slipping away from him.
Brooke set his plan in action by phoning his stepchildren, Mike and Sara, who both live in Seattle, and asking them to come to his home in Salt Lake City. He also summoned two dear friends who were vacationing in Maine, and spoke by Skype to his sister in New York. On Monday, July 29, he went to see his doctor at the University of Utah Medical Center to make what he called an “official request” to have all his life-sustaining apparatus — ventilator, diaphragmatic pacer, external oxygen, cardiac pacemaker, feeding tube — turned off or removed and to be referred to hospice care.
Peggy, ever the optimist, asked the doctor for one more round of blood tests to be sure Brooke’s desire to die wasn’t caused in part by an undiagnosed infection that might be clouding his thinking — something that had happened in the past. The blood- test results came back clean. The people who mattered to him were nearby, and Brooke was ready.
But Peggy wasn’t quite. When the hospice physician and nurse arrived on Wednesday morning to finish enrolling Brooke into their care, they asked if he would like to set a date for the ventilator withdrawal to take place. “Today,” Brooke said, stunning everyone, especially Peggy. The hospice workers said they needed a few hours to assemble the medications he would need, especially the morphine that would keep him from suffering from “air hunger” as his breathing support was dialed down — a terrifying potential side effect of being taken off a ventilator. They said they’d be back at 3 o’clock, but Peggy suggested that they should just come back the next day, according to an article in The Salt Lake City Tribune. But Brooke insisted on doing it that day: “I don’t want there to be a tomorrow.”
With several hours before 3, Brooke phoned some old friends to say farewell and then remembered one preparation he had not yet made: choosing a headstone for the grave site he and Peggy had picked. So he and his entourage went off to the Salt Lake City Cemetery, just a few blocks away, on what they called the Hopkins Liberation March. Sara — who stopped with her mother on the way back to get an ice-cream cone — took a photo of the excursion (second in the gallery). And then everyone assembled again at the house. The hospice physician gave Brooke a sedative, and Brooke sat in his wheelchair for a while with his stepchildren, his friends, a few of his favorite caregivers and his wife. He said he was getting sleepy, and he was put into bed. Peggy got in beside him. A gospel song he had chosen for the occasion, Marion Williams’s “My Soul Looks Back,” played on the stereo.
Peggy nestled into Brooke’s shoulder as the vent was dialed down and the morphine was delivered so he wouldn’t feel like he was strangling. “I lay there and could hear his breathing rate get slower, then less regular,” she told me by telephone a few days ago. “A breath and then a space, and then a breath and then a long space, and then a breath and then a very long space, and then a breath. You knew that one of these breaths would be the last, but you never knew which one.”
After the breath that turned out to be the last, Peggy told me, she lay next to Brooke for a very long time, her hand on his face, feeling the warmth leave his body. She was crying, wishing she could have asked him to wait just a little while longer, yet knowing he didn’t want to. She took some solace remembering that when the hospice doctor had said that morning, “Yes, we can help you,” Brooke looked happier than he had in a long time. Sara took a photo of Brooke at that moment (third in the gallery), his huge white smile practically bursting through the lens. The “pure elation” of his expression, Peggy said, was what finally convinced her that he knew his mind and was even taking strength from his decision to die on that day, and on his own terms.
Later, Peggy told the Tribune reporter, Peggy Fletcher Stack, that “it was peaceful and painless, just as he wanted it” — close to the kind of ending he described to me earlier as a “generous death.”
A big memorial service is planned on the University of Utah campus for Sunday, Aug. 25. Brooke chose many of the musical and poetry selections, among them a friend’s harmonic rendition of “Amazing Grace” and a reading from Wordsworth’s “A Slumber Did My Spirit Seal.” He also asked that the service include the “Pavane,” by Faure — which, Peggy said, “always makes us both cry.”
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