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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Sunday, August 18, 2013

On Brooke's Choice

U. of Utah English professor’s final odyssey to the great beyond
End of life • Paralyzed U. prof Brooke Hopkins takes his final odyssey to the great beyond as his family makes a painful decision to let him go.
Leah Hogsten | The Salt Lake Tribune Peggy Battin, daughter Sara Pearson and son Mike Battin say their goodbyes and throw kisses at the casket of Brooke Hopkins after his memorial service Aug. 2, 2013.
On a Thursday morning in late July, Sara Battin Pearson got an unexpected phone call from Brooke Hopkins, who jumped right to the point: “I want to die, Sara.”
It was the first time Sara had heard her 71-year-old stepdad express so emphatically his desire to be done with this life. Sure, Brooke, a beloved University of Utah emeritus English professor who was paralyzed in a 2008 bike collision, had said before that his pain was unbearable or that he doubted he would live through the night. But this time his words were less descriptive, more decisive — like a demand or an impassioned plea.
On the other hand, Mike Battin, Sara’s brother, had heard Hopkins say many times in the years after the accident that he wanted to die, but his request had grown increasingly urgent in recent months.
Students who took Brooke’s spring class on Moby-Dick were aware that he probably wouldn’t be around to teach Don Quixote in the fall. His in-home caregivers knew he was yearning for release.
And 72-year-old Margaret Pabst Battin — known as “Peggy” — Brooke’s wife of 27 years and a nationally renowned medical ethicist who specializes in end-of-life issues, had had numerous conversations with her husband about dying over the decades, but especially in the past year.
Often, though, he was ambivalent, Peggy felt, seesawing between desiring death and loving life.
When family members gathered July 31 at the couple’s Salt Lake City Avenues home to say their final goodbyes, hospice workers asked for an hour’s delay to get the appropriate pain medication. Peggy, wishing, perhaps, to hold on to him a little longer, suggested maybe they should come back “tomorrow.”
Brooke retorted, in his deep, hoarse voice, filled with frustration: “I don’t want there to be a tomorrow.”
A patient’s right • Conversations about when and how to die are much more common in families these days than they were even a few decades ago.
When life-supporting technologies such as ventilators were introduced, the thinking among many was that once such equipment was attached, it would be immoral or unethical to discontinue their use — even if the patient didn’t want to go on.
Slowly, through discussion, disagreement and debate, that worry has been replaced by an emphasis on a patient’s right to choose whether to continue such life support.
Several generations of doctors now have “grown up with the understanding that the physician’s sole obligation is not to prolong life at all costs but to abide by a patient’s wishes,” says Alan Meisel, a leading authority on end-of-life decision-making and founder and director of the University of Pittsburgh’s Center for Bioethics and Health Law.
There is now a “national consensus on end-of-life care,” Meisel says, “that it is permissible both legally and morally — and as a practical matter — to terminate life-sustaining treatment when patients no longer want it or when they left instructions [beforehand] that they wouldn’t want it.”
Even many religious guidelines do not oppose withdrawing such life-sustaining treatments.
“Discontinuing medical procedures that are burdensome, dangerous, extraordinary or disproportionate to the expected outcome can be legitimate; it is the refusal of ‘overzealous’ treatment,” the Catholic Catechism says. “Here one does not will to cause death; one’s inability to impede it is merely accepted.”
In Utah, the Advance Health Care Directive Act, enacted in 2008, recognized that “developments in health-care technology allow the unnatural prolongation of life,” explains Leslie Francis, a University of Utah law and philosophy professor who writes about advance directives, disabilities and access to medical care.
The law states that competent patients “should have the clear legal choice to accept or reject health care,” Francis says, quoting the statute’s wording, “even if rejecting health care will result in death sooner than death would be expected to occur if rejected health care were started or continued.”
It is important, she says, not to create conditions in which people are afraid to start a treatment for fear they can’t stop it later. “You don’t want a world in which you can’t try and see what kind of outcomes you can get.”
When patients conclude that they are done trying, hospice doctors and nurses can help family and friends respect the patients’ wishes.
“We want to make them comfortable, to allow them to let go,” says Carla Prepejchal, a Utah hospice nurse and case manager who was not involved in Brooke’s care but has tended to many dying patients. “We give medication to deal with any symptoms they may have — it could be agitation, air hunger, lashing out, vomiting, bleeding. But we don’t do anything to hasten someone’s death.”
The goal is “to control the symptoms,” Prepejchal says, “so patients have the highest dignity before they die.”
That’s the aim of Utah’s law, too, to permit patients to “die with a maximum of dignity and function and a minimum of pain” — in short, exactly what Brooke was seeking.
An exuberant life • Brooke and Peggy arrived at the U. the same year, 1975. He was fresh from Harvard with a background in 18th- and 19th-century British literature. She had a master’s degree in writing and a doctorate in philosophy from the University of California at Irvine.
He was a tall, handsome, lanky outdoor enthusiast, gourmet cook and a lively conversationalist. She was a fair-haired beauty and rigorous thinker, questioning every assumption, always arguing the opposing points of view.
Sparks flew from the start, and within a year, they moved in together. Seven-year-old Sara, Peggy’s daughter from a previous marriage, came to live with them. Her son, Mike, 2 ½ years older than Sara, visited on holidays and summers. The couple shared an action-packed academic life, traveled to exotic locales, danced all night in undiscovered backwoods blues joints and tasted a rich variety of spicy dishes and good wine.
They married in 1986.
Brooke became one of the U.’s most popular professors as he explored the works of Romantic poets and the genre of autobiography.
Peggy emerged as a pioneer in the field of bioethics, specializing in end-of-life questions. Suicide. Euthanasia. Do Not Resuscitate orders. When and how to die. She cranked out essays, compiled collections and edited volumes on death and medicine. Soon she was known for titles such as The Least Worst Death and, more recently, Ending Life: Ethics and the Way We Die.
Yet it was always about other cases, other people, other circumstances.
That is, until Nov. 14, 2008, when her husband, biking down City Creek Canyon, collided with another rider and broke his neck. Brooke became a quadriplegic, paralyzed from the shoulders down.
Many people with spinal-cord injuries say they want to die when they first learn the extent of their injuries and the challenges ahead. Research shows that if they make it through that initial year, most are ready to embrace life as it is.
That was clearly the case with Brooke, who developed a fierce desire to fight on, seeing his limitations as an “adventure.”
He labored diligently to breathe on his own and regain small movements in a few fingers and toes. He learned to navigate his wheelchair with his head and then with fingers on his left hand. He could write emails using voice-recognition technology and taught courses to retirees — many of them fellow educators — in his living room. Thoreau’s Walden, The Iliad, The Odyssey, The Aeneid, Dante’s Divine Comedy, The Canterbury Tales, Shakespeare’s sonnets and “The Tempest.”
But setback after setback — infections, pneumonia, spasms, sleeplessness, repeated hospitalizations — led to a slow, steady decline in the past year or so. He finally had to give up one of his great pleasures, eating, and be fed through a tube.
A person of great dignity, Brooke suffered daily, almost hourly indignities, from suppositories every morning and constant suctioning to being rolled over, poked and prodded, bathed and bothered.
Last summer, Brooke had had enough and wrote what he called his “final letter” to family and friends.
“Relentless pain corrodes the soul. Mine has been corroded to the point at which I simply no longer desire to live in this condition. … Is this selfish on my part? Maybe. If it is, I am deeply sorry. I am especially sorry for what it will do to Peggy, who has done so much to keep me going,” he wrote. “ … [Peggy’s and my] life together has been an incredible adventure. Oh, my God, what an adventure. Even after the accident. But the time has come.”
He never sent the letter.
Brooke rallied enough to direct two more courses on Moby-Dick in fall 2012 and spring 2013 but required extensive assistance from an English professor colleague. He no longer could talk much or lead discussions. Though students treasured his presence, he could make only occasional comments.
In recent months, Brooke couldn’t “hold much of a conversation with us,” Sara Pearson says. “He wasn’t able to be as present.”
Pain comes “in many forms, not just physical,” she says. “His face was etched in pain all the time.”
Dave Mickelsen, a longtime friend, also saw the decline.
“Brooke’s interest in and ability to interact with other people — which had been his hallmark — were contracting,” Mickelsen says. “The horizon of his interests was radically reduced.”
The last class met in the couple’s home July 15.
Brooke then turned to a new goal: dying.
“In the past there had been dramatic moments in which Brooke would say he was in agony,” Mickelsen recalls. “Now there were no histrionics. It was more matter-of-fact, a conscious, reasoned decision.”
But how to do it?
The last day • When Mike Battin walked into the Avenues home on Saturday, July 27, Brooke’s first words were not “hello” or “how are you?” but rather, “I want to terminate my life.”
On Sunday, when Mike’s sister, Sara, arrived, his message was the same.
“I am dying,” Brooke told her. “I want to be free.”
Both children saw their role as listening and being supportive, while helping their mom accept his wishes. The talk was only about how — not whether — this was going to happen.
On Monday, the family went with Brooke to see his primary physician so the doctor could hear for himself Brooke’s decision and mental competence.
The retired professor told him, “I’m alive and I’m dead,” Mike recalls, and the family at first had a tough time deciphering what he meant.
“I think what he was trying to say was that although he was alive,” Mike says, “it was only because of the machines.”
In other words, he would be dead without them.
Peggy wanted to ensure that there wasn’t some kind of physical problem that was prompting his desire to die — an infection, for instance. She asked for more blood tests to rule it out. They all came back clean.
By Tuesday, the doctor recognized and respected Brooke’s resolve — and referred the family to hospice.
The next morning, the family met with a hospice doctor.
“She had the best bedside manner of any physician I have ever met,” says Mike, a former EMT who has dealt with hundreds of doctors. “She told us in her 11 years with hospice, she had never seen anyone so convinced, so resolute as Brooke.”
Together, they worked out a plan for his passing — that very day.
Brooke would receive medication for anxiety and pain. His life-sustaining machines — including a ventilator and a diaphragmatic pacer, which helped regulate his breathing — would be scaled back.
Neither external oxygen nor his feeding tube was in use, and his cardiac pacer did not require turning off.
In the past, when respirators were removed, many patients suffered from air hunger, which left them gasping for breath, the hospice doctor told them. Medications now can block those impulses, but are not the cause of death.
That knowledge gave Brooke the assurance that it would be a gentle way to go.
“We all had the same message — this is a good thing, let it happen,” Mike Battin says. “There was not a wavering moment in any of us.”
Except in Peggy.
Though she agreed intellectually with the decision, she was not ready. She wanted more time.
And, yes, despite her bedrock conviction that a person should have the right to be the architect of his or her own death, it was emotionally devastating.
“You can’t imagine anything more intensely personal, because I love this person,” she had said in 2009, her voice cracking, tears in her eyes at the prospect of his death. “But there are two components to love — love is partly wanting to be with him, but it’s also wanting what’s best for him and wanting to want what he wants. What he wants and needs might be different from my self-interests.”
No one else would feel the loss as deeply as Peggy, the one who had been his companion and lover for decades, the one who had cared for him in his last years of agony and transcendence, the optimist who saw the possibility of more good days ahead.
Now his death was imminent, Peggy knew. Wednesday. Today.
But wait, the hospice workers said they needed an hour. Instead of scheduling his passing to begin at 1:30 p.m., it was pushed back to 3.
How to fill the time?
Brooke called a number of his close friends to say goodbye. He had already written his epitaph, picked out a Salt Lake City Cemetery plot, settled on burial rather than cremation. But he hadn’t selected a headstone. So the almost-gleeful professor in his wheelchair led a tiny band of family, friends and caregivers — in what was dubbed the “Hopkins Liberation March” — a few blocks to the Salt Lake Monument Co., next to the cemetery. They found just the right one and returned to the house in the sweltering July heat, Peggy and Sara stopping for an ice cream cone along the way.
At around 3 p.m., the hospice doctor gave Brooke drugs for anxiety. The end had begun.
“Thank you” were his last words to Mike. To Peggy, “I love you.”
Brooke was getting sleepy, so they moved him to his bed. The necessary machines were slowly turned down. Peggy curled up next to her husband for the last time. A CD of Marion Williams’ “My Soul Looks Back” played quietly as he drifted away.
“It was peaceful and painless,” Peggy says, “just as he wanted it.”
It was, indeed, a least worst death.
Brooke died “of his injuries from the accident, which became an inevitable downhill course,” says Francis, the legal expert and family friend. “Doctors intervened and intervened and intervened to reverse that course, but he eventually reached a point where their interventions were no longer acceptable to him.”
A small army of friends gathered two days later at the cemetery to remember Brooke, to praise him, to place flowers on his casket.
“Brooke showed a lot of dignity, great grace and spirit, and strength under the worst of circumstances,” says his sister, Lisa Hopkins Wheeler, who came from New York City for the occasion. “He expressed all of that in his decision finally to end his life.”
A friend at the service mentioned he once asked Brooke about a set of narrow, wooden skis hanging on the wall. The intrepid English professor said he had used them to ski the Wasatch Mountains’ “Little Matterhorn,” a popular yet arduous backcountry destination.
Brooke wasn’t a great skier, another friend acknowledged, but he was unafraid of plowing down a scary mountain or jumping into the unknown — including death.
And what of Peggy and her views about the end of life?
She still supports a person’s right to choose, she says, but “autonomy is way more complex than you ever could have imagined — and this is true not just for Brooke but for every person who faces the end.”
You can’t assume that “all choices are alike,” she says, “so you have to be alert to what someone deeply wants.”
She believes “in honoring a loved one’s wishes,” she says, her voice dropping, “even if it is painful to you.”
And, she adds, it is.
Facebook: peggy_fletcherstack
Twitter: @religiongal
Memorial service set
A memorial service will be held Aug. 25 at 5 p.m. in Libby Gardner Hall on the University of Utah campus.
Brooke’s ‘final letter’
Dear family, friends, and caregivers,
First, I want to tell you how grateful I am for the love and support you have given me over the past almost four years since my accident in November of 2008. Without that, I would never have survived as long as I have. I’m immensely grateful for this and I hope that I have repaid it in some measure by my own willingness to go on despite considerable odds. I wish I had the words to tell you how much you have meant to me, but I simply don’t.
But now I want to tell you that I’ve decided that I can no longer go on living in a situation that I have been in over the past five months since my pneumonia. A great deal of this has to do with the relentless pain that I have suffered over those months. I have struggled with this, needless to say. On the one hand, I want to keep on fighting and above all to keep on teaching. On the other, I find that I’ve reached the limit of my capacity to go on. It is simply just too hard. Pain eats away at your soul. For many years since the accident, I have been motivated by a deep will to live and to contribute to the benefit of others in my small way. I think I have done that. And I am proud of it. But, as I have told [my wife] Peggy over the past few months, I knew that I would reach a limit to what I could do. And I have arrived at the limit over the past couple of weeks. I knew that there would come a time when I would reach that limit. I didn’t know when it would be. But I knew that it would come, and it is here, now. You may think that I’m depressed. I am. And I have every reason to be, I think. But that doesn’t take away from the fact of what I am currently feeling. Despair. And hopelessness.
I don’t mean to come across as self-pitying. I am not. I am simply at the end of the line and what I can tolerate. As I’ve said, relentless pain corrodes the soul. Mine has been corroded to the point at which I simply no longer desire to live in this condition. I do not know how I will go about departing. It’s very complex. I do not have a terminal condition. In fact, because of my diaphragmatic pacer, I could go on living for a very long time (unless of course I come down with another bout of pneumonia, which is probably inevitable anyway). But I do know now that I do not wish to continue to live. Is this selfish on my part? Maybe. If it is, I am deeply sorry. I am especially sorry for what it will do to Peggy, who has done so much to keep me going. To keep me motivated. (Believe me, I am crying as I write this.) I have pulled in many different and contradictory directions. On the one hand, part of me wants to keep on fighting. On the other, I simply wish to give up at this point. As I say, I have no idea how I will arrange for my own departure from the beautiful life I have lived. Peggy and I have had an amazing 35 or so years together. There have been some rough moments as there are in any deep relationship as long as ours. But our life together has been an incredible adventure. Oh, my God, what an adventure. Even after the accident. But the time has come. I think she understands this. I do not wish to bring her any more grief and sadness about my condition. And my state of mind as it has evolved over the past few months. But the time has come.
Forgive me. You have all been so loving and generous. Thank you.
All my love, Brooke
(Dated July 28, 2012, about a year before his death)
More photos, videos, stories
To see more photographs, view videos and read previous stories about Brooke Hopkins’ ordeal, go to

Sunday, August 11, 2013

Memorial service for Brooke

A memorial service for Brooke will be held August 25, 2013, at 5:00 pm, in Libby Gardner Hall on the University of Utah campus.

July 31, 2013, Goodbye, dear Brooke

U. professor Brooke Hopkins dies 4 years after accident
Persevering » Brooke Hopkins battled through pain after a paralyzing 2008 bicycle injury to keep writing, resume teaching.
First Published Jul 31 2013 10:33 pm • Last Updated Aug 01 2013 03:03 pm
Four and a half years after Brooke Hopkins was paralyzed in a bike accident, the well-loved and well-spoken professor passed away quietly Wednesday at his home in the Avenues.
Hopkins, 71, was — as always — surrounded by family and friends.
Hopkins’ energetic style, knowledge of literary allusions, grasp of human emotions and command of language made him immensely popular with students and faculty. During his decades at the university, Hopkins rose to be chairman of the department and was also instrumental in the founding of the school’s writing program. He made friends everywhere he went.
His future wife, Peggy Battin, arrived at the school the same year as Hopkins to teach philosophy, and before long, they were a couple. Eventually, they would marry, and Hopkins helped raise two stepchildren, Sara Battin Pearson and Michael Battin, both currently of Seattle.
When Hopkins retired in 2008, he had plans to write and travel, but the accident in November put an end to all that. It took more than two years for him to regain the ability to breathe on his own enough to return to his home. At home, it required round-the-clock care just to maintain a minimal quality of life — endless medicines, physical therapy, bathing, tubes and machines whirred all around, while Hopkins faced constant pain, infections and setbacks.
The arduous struggle for survival was sometimes unbearable, he told The Salt Lake Tribune in a series of stories about the couple, but it was also "transformative."
Though still paralyzed, Hopkins resumed teaching eager students — mostly retired educators — from an automated wheelchair in his living room. He could no longer pace in front of a blackboard, but his mind and insights into The Iliad, The Odyssey, Chaucer, The Divine Comedy, Moby Dick and Thoreau’s Walden were more astute than ever.
"The real challenge for me has been in trying to expand my mind enough to comprehend my own catastrophe without letting it become that way," Hopkins wrote in December 2012 (with Battin’s help) on a blog they both maintained. "I’ve tried to just let it be part of me, part of who I am becoming, and to always keep in mind how extraordinarily much I’ve gained, not just what I’ve lost."
The pair concluded that final blog entry with these words: "This story doesn’t end, and it doesn’t need to be a tragedy," they wrote together. "It’s still a story of love, even if it’s love under trial."