Sometime early last week Brooke wrote:
Some of you may remember a blog I wrote a number of months ago about finding my groove in breathing—that lasted I think about 5 minutes in a 20-minute trial of breathing off the vent, where the other 15 minutes were very difficult. I think I compared those five minutes to breathing in Buddhist meditation; that all-too-brief time was extraordinary. I’ve had a few other periods of in-the-groove breathing that approached that since then, but they’ve been sporadic, and often punctuated with episodes of anxiety—something like what you experience when you think you’re drowning. Well, this may sound like boasting (and I have to say that it is indeed the result of a lot of hard work and concentration), but today I reached a new level of in-the-groove breathing.
It’s been coming for a week or so and started last Sunday, when I suddenly realized that I had no anxiety about breathing off the vent from the beginning of the session to the end, an hour and fifteen minutes later. Then on Monday I wondered if I could repeat the same exercise with a different therapist—lo and behold, I could. In fact, I was able to breathe without any anxiety, in the groove, from the very start of the morning session, for an hour and 45 minutes, and in the same way, in the afternoon, for another hour and a half, making a grand total of three and a quarter hours for the day. What was marvelous about this was how all the breathing work I’ve had to do since the earlier blog has paid off—like any other exercise, no pain no gain, but there’s been plenty of challenge here. It’s not exactly pain that one has to endure in order to have gain, but rather overwhelming and utterly visceral anxiety, when you fear you can’t breathe even though you know the fear is irrational. The fear is real, but the gain, when it comes, is tremendously exciting. Just the same, there’s still a long way to go before you’re really entirely off the vent.
A day or so later, Peggy wrote:
Tonight, after a perfectly beautiful day punctuated by rainstorms and wind, we were having dinner in Brooke’s hospital room with a friend, a doctor who is Brooke’s spinal-cord mentor, eating a delectable dinner of trout. All of sudden and without any warning, the power went out—lightning, it later turned out, had hit a power substation, though of course we didn’t know that at the time. The lights went out, the music went off, and Brooke’s big air-flow bed lost power and began to deflate. The ventilator flickered for just a second as the emergency backup power came on, but—and this is the symptom of progress—Brooke said he had no anxiety at all about whether he would be able to breathe if the backup power didn’t work.
That was several days ago. The reward? The head respiratory therapist announced the next morning that it would no longer be necessary to have a respiratory therapist sit in Brooke’s room all the time while he’s doing his off-the-vent trials; they have enough confidence that Brooke can breathe on his own safely for at least the intervals between times when they check on him every fifteen minutes—that is, Brooke’s out of the critical stage when they have to watch him all the time. (Don’t worry, there’s an alarm system too, just in case.) The central element here is overcoming that gut-level anxiety when you don’t know where your next breath is coming from; now he knows it’ll come from him.
A few days later, we wrote together, still thinking about breathing:
One of the things you discover when you spend a long time in a healthcare facility is how many different people are involved in your care: nurses, aides, speech therapists, physical therapists, occupational therapists, every sort of specialty. We tried to guess a while ago how many different nurses had taken care of Brooke over the last seven months: we came up with a figure in the mid-hundreds—that many different faces, different personalities, and well-trained pairs of hands.
But in every specialty, despite the same training, they’re all different. Brooke has been very, very interested in the lives of the different caregivers; he is enormously interested in their stories, their hardships in their lives, what makes them tick. These are the people who are all around him, every day, and it’s a completely new world. He loves all this contact with new people, and they seem to love him—and are often astonished that a patient actually takes a genuine personal interest in them. Sometimes, the interest grows even stronger and a deep bond forms, even though it is between patient and professional, caregiver and one-in-need-of-care.
Sometimes, though rarely, it’s the other way around—the vibes aren’t so good, there’s a little lack of confidence, it just isn’t a good match. There’ve been only a tiny handful of cases in which Brooke simply hasn’t liked the people assigned to his care—barely even a handful, out of the hundreds who have taken care of him. He doesn’t complain much, but he can feel it.
With breathing, because the respiratory therapists make such a difference to his life and are so closely associated with those visceral fears, he is very, very sensitive to differences and clearly has his favorites—the ones for whom he performs best, the ones who succeed best in quelling the irrational fears. There are some who seem to be able to energize his breathing efforts, who coach in just the right way or understand his need for silence while he’s concentrating on this, or whose sheer presence is comforting while he’s doing something really hard. But there are also a few at the other end of the scale—where there isn’t such a great degree of mutual sympathy and understanding, where his anxiety wells up most greatly. Brooke doesn’t like to play favorites, but in any situation where there’s such intimate, ongoing contact as health care, it’s hard not to recognize that you resonate better with some people than others.
One of these others among the respiratory therapists was on a couple of days ago, indeed one of the ones he’s had the most trouble in working with. Peggy’d also had a little bit of unspoken friction with her, cross about the way the trach mask had been placed on a couple of occasions. Brooke had been uneasy. She’d cut off the trials early a few times, a sign that something wasn’t working. But somehow today, when she disconnected the vent tubing and covered the opening of Brooke’s trach with the mask that blows warmed and humidified room air past it—this is the start of the off-the-vent trials—he just relaxed. She smiled. He breathed. She smiled. He breathed again and again, and went on for an hour and forty-five minutes. Not only that, but toward the end he pulled in some of the biggest volumes so far—over 400, yet. Now she wasn’t just smiling but completely elated, and when she was finished hooking him back up to the vent, she almost ran down the hall to tell the other respiratory therapists what a huge success he’d had—or rather, they’d had.
Back in the room later on, she was telling Peggy about it, still with the new smile on her face. She told me again how excited she was by what Brooke had been able to do, and added, with a wonderful twist of whimsy, and he was even able to do it with me. She’d known all along that even though Brooke doesn’t like to play favorites, she wasn’t one of the therapists with whom he really resonates, so for her this was a special victory. And for Brooke too—not just because it meant stronger breathing, but because it was a way of recognizing the difficulty of the jobs of therapists of all sorts, OTs, PTs, respiratory therapists, even the physicians, who can’t as easily trade on mutual resonance in personalities with a given patient to make these hard jobs easier. Celebrating the people he’s really loved is easy; it’s much harder to think openly about the ones for whom it hasn’t been this way. Brooke and I both know this from years of teaching, of course—there are some students who are on exactly the same wavelength and who remain favorites over the years, some with whom you never quite connect—but in sustained health care (he’s spent seven and a half months in hospitals, so far) these unavoidable differences play an even greater role.
Brooke sometimes repeats a Quaker saying that Peggy learned as a child, “There is that of God in every man.” You don’t have to be religious to think this; you just have to look beyond your initial antipathies, mistrusts, even animosities to see what’s still human and wonderful in somebody else, and this respiratory therapist’s magical smile let us pierce through to that. I think too that she could see that in us, both our delight and a kind of apology for the distance we’d let creep in.
Tuesday, June 30, 2009
Sunday, June 21, 2009
The Kindness of Strangers: From Pansies to Pie
At the very beginning of spring, when hope of growth still seemed distant, some kind person planted brightly-colored pansies in three of the empty pots sitting on the ledge at the front of our house. I must have asked a dozen different people about it, but have never discovered who did this wonderful thing.
Yesterday, a freshly baked blueberry pie appeared in Brooke’s hospital room—still warm when we discovered it. We’d been outside—Brooke in his powerchair, driving some of the way, Peggy working the controls in tight spots or steeper slopes. We were traveling through the Lakeview Hospital campus where the South Davis facility is, through the parking lots, around by the front of the hospital building, then up the street on the far side and over the top, above the big main hospital building. We’d come for the fresh air and the astonishing view: from this high point, in what are geologically the last foothills of the Rocky Mountain plateau, you can see out over the beginnings of west-desert Basin country—huge areas of flat desert land, with mountain ranges every 50 miles or so in between. From our vantage point, you could see the whole of Antelope Island, stretched out lengthwise in the middle of the Great Salt Lake, and beyond it the various mountain ranges—we’ve hiked in many of them—all the way out to the horizon. Brooke’s been indoors, in hospital rooms, for almost all of the past seven months, and these little trips outside are extraordinarily important to him.
We returned to find the pie, warm and completely delicious. We haven’t discovered who did this wonderful thing either, though the nurses said they’d seen a woman with sort of short brown hair. In between the pansies and the pie and indeed from the first moments after the accident, there’ve been amazing acts of anonymous kindness: somebody shoveled the snow, somebody mowed the lawn, people left multiple bottles of wine by the back door, people brought food or fruit from the farmers’ market—sometimes we’ve known where it’s from, sometimes we’ve had only the little refrigerator dishes as a way of identifying the source. There’s still a small mountain of them in the pantry, waiting to be eventually connected with their unknown owners, presumably after Brooke comes home. Of course, we haven’t any idea of when that will be—by one account it might be the end of the summer, by another he might be in the hospital a full year. We don’t allow ourselves to worry about this though; he’s (reasonably) comfortable, cared for by a generally wonderful staff (sometimes, if I’m asleep in the fold-back chair in his room, I can hear them gently murmuring with him as they turn him or cath him or reposition him on the bed), and has wonderful friends who come to be with him, some often, some when they can, and some by phone or e-mail or postings on the blog.
Last night, one great friend was there, experimenting with so-called mirror neurons. She hopped up onto the bed, stretched her bare feet out next to his. Watch my right foot, she said, and moved her toes and foot back and forth in a rhythmic pattern. After a while, his right toes and foot began to move, too, synchronized in the same rhythmic pattern. When her foot stopped, his foot stopped too. Was this mirror activity or was he voluntarily moving his foot? No matter; what’s important here is movement at all, and while it has come back very, very, very slowly, it’s really here.
That’s about recovery and function. But what’s also been important, from pansies to pies and all the acts of anonymous and non-anonymous kindness in between, is something about concern and care and, well, love. Thanks to you all.
Peggy
Yesterday, a freshly baked blueberry pie appeared in Brooke’s hospital room—still warm when we discovered it. We’d been outside—Brooke in his powerchair, driving some of the way, Peggy working the controls in tight spots or steeper slopes. We were traveling through the Lakeview Hospital campus where the South Davis facility is, through the parking lots, around by the front of the hospital building, then up the street on the far side and over the top, above the big main hospital building. We’d come for the fresh air and the astonishing view: from this high point, in what are geologically the last foothills of the Rocky Mountain plateau, you can see out over the beginnings of west-desert Basin country—huge areas of flat desert land, with mountain ranges every 50 miles or so in between. From our vantage point, you could see the whole of Antelope Island, stretched out lengthwise in the middle of the Great Salt Lake, and beyond it the various mountain ranges—we’ve hiked in many of them—all the way out to the horizon. Brooke’s been indoors, in hospital rooms, for almost all of the past seven months, and these little trips outside are extraordinarily important to him.
We returned to find the pie, warm and completely delicious. We haven’t discovered who did this wonderful thing either, though the nurses said they’d seen a woman with sort of short brown hair. In between the pansies and the pie and indeed from the first moments after the accident, there’ve been amazing acts of anonymous kindness: somebody shoveled the snow, somebody mowed the lawn, people left multiple bottles of wine by the back door, people brought food or fruit from the farmers’ market—sometimes we’ve known where it’s from, sometimes we’ve had only the little refrigerator dishes as a way of identifying the source. There’s still a small mountain of them in the pantry, waiting to be eventually connected with their unknown owners, presumably after Brooke comes home. Of course, we haven’t any idea of when that will be—by one account it might be the end of the summer, by another he might be in the hospital a full year. We don’t allow ourselves to worry about this though; he’s (reasonably) comfortable, cared for by a generally wonderful staff (sometimes, if I’m asleep in the fold-back chair in his room, I can hear them gently murmuring with him as they turn him or cath him or reposition him on the bed), and has wonderful friends who come to be with him, some often, some when they can, and some by phone or e-mail or postings on the blog.
Last night, one great friend was there, experimenting with so-called mirror neurons. She hopped up onto the bed, stretched her bare feet out next to his. Watch my right foot, she said, and moved her toes and foot back and forth in a rhythmic pattern. After a while, his right toes and foot began to move, too, synchronized in the same rhythmic pattern. When her foot stopped, his foot stopped too. Was this mirror activity or was he voluntarily moving his foot? No matter; what’s important here is movement at all, and while it has come back very, very, very slowly, it’s really here.
That’s about recovery and function. But what’s also been important, from pansies to pies and all the acts of anonymous and non-anonymous kindness in between, is something about concern and care and, well, love. Thanks to you all.
Peggy
Sunday, June 14, 2009
The Bionic Man? Of Pumps and Pacers
Brooke’s been at South Davis for more than three months now. South Davis specializes in vent weaning, among other things, and he’s been the beneficiary of long, sustained, one might even say loving attention. When he came here at the beginning of March he could initiate breaths and manage to be off the vent (with just a little oxygen supplement and warmed and humidified air) for what seemed like a huge amount of time: five minutes. It seemed like forever, he says. Now he can do an hour easily, or an hour and a half, or more, twice a day.
When he came here, he was also having lots of trouble with pain and spasms, especially huge, enveloping spasms that gripped him, sometimes gripped his whole body. The worst, he said, were the ones that felt like a vise gripping his chest, and they interfered with practically everything: eating, breathing exercises, talking, everything. They’ve improved too, presumably with the drugs he’s been taking, especially something called baclofen: a little magic pill, 30 mg. four times a day—including in the middle of the night. Of course they’re not really magic, and they can only do so much: the spasms persist to some degree, though they’re not nearly as difficult as earlier. Things are obviously going in the right direction.
But they’re going slowly. That’s to be expected, especially as time goes on; but there are ways of assisting them: high-tech ways like pumps and pacers.
Thus Brooke may become even more of a Bionic Man. First, he’ll go to the University hospital this Wednesday to test for a baclofen pump: the oral baclofen is discontinued for the day, and, via a lumbar puncture, he gets a test dose of intrathecal baclofen. If that’s effective, he’ll get the pump itself: it dwells under the skin of the abdomen, with a tiny tube that runs around to the back of the spine, then through the spinal column into the intrathecal space itself, where it mainlines baclofen right to the spinal cord without the need for oral dosing. That would allow lower doses, fewer side effects, and a sense of high-tech status.
Next he’ll also be tested for a diaphragmatic stimulator, or pacer. This newly improved device works in a simple way: two electrodes are attached some distance apart on the underside of each half of the diaphragm (did you know there were two? We certainly didn’t), and an electric pulse is sent from the battery pack to make them fire. When they do, the diaphragms contract, and this pulls air into the lungs—this is the way we ordinarily breathe, sucking air into a vacuum created as the diaphragms contract, not having air pushed into our lungs, the way a mechanical ventilator operates. Of course, the diaphragm pacer too requires testing: first, a test to see if the phrenic nerve is intact, and the second a test to see if firing the electrodes makes the diaphragms behave. The good news is that this version of the diaphragmatic pacer doesn’t require a big open-chest surgery, just four little laparoscopic slits, and the leads come out through these holes and attach to the battery pack. Then you get to wear the battery pack on a belt around your waist, and if you didn’t feel high-tech enough already, you get to admire this, added to the cardiac pacemaker you already have, the intrathecal indwelling backlofen pump, and now this, the diaphragm pacer. Bionic Man, yes indeed—but it’s all in the interests of breathing better and staying (relatively) free of spasm. Nice, huh?,
There’s other progress as well, though still glacially slow: with his left hand he can touch the thumb to his forefinger, middle finger, and the rest, and can—amazing exercise—squeeze toothpaste out of a tube. He’s starting to work with a hand-operated joystick on his wheelchair, though driving a big and heavy a piece of machinery, especially one that often seems to have a mind of its own, is still a challenge. There’s some movement in his right hand; some in his right toes, and a whisper in his left toes, the furthest behind. But he has a fair amount of force in each leg, and that’s a wonder to all. If you come to visit, especially if there are two of you, you can (under his instruction) pick up his legs and make bicycle movements—that’s where you get a real sense of forward, forward progress, even if it is so torturingly slow.
When he came here, he was also having lots of trouble with pain and spasms, especially huge, enveloping spasms that gripped him, sometimes gripped his whole body. The worst, he said, were the ones that felt like a vise gripping his chest, and they interfered with practically everything: eating, breathing exercises, talking, everything. They’ve improved too, presumably with the drugs he’s been taking, especially something called baclofen: a little magic pill, 30 mg. four times a day—including in the middle of the night. Of course they’re not really magic, and they can only do so much: the spasms persist to some degree, though they’re not nearly as difficult as earlier. Things are obviously going in the right direction.
But they’re going slowly. That’s to be expected, especially as time goes on; but there are ways of assisting them: high-tech ways like pumps and pacers.
Thus Brooke may become even more of a Bionic Man. First, he’ll go to the University hospital this Wednesday to test for a baclofen pump: the oral baclofen is discontinued for the day, and, via a lumbar puncture, he gets a test dose of intrathecal baclofen. If that’s effective, he’ll get the pump itself: it dwells under the skin of the abdomen, with a tiny tube that runs around to the back of the spine, then through the spinal column into the intrathecal space itself, where it mainlines baclofen right to the spinal cord without the need for oral dosing. That would allow lower doses, fewer side effects, and a sense of high-tech status.
Next he’ll also be tested for a diaphragmatic stimulator, or pacer. This newly improved device works in a simple way: two electrodes are attached some distance apart on the underside of each half of the diaphragm (did you know there were two? We certainly didn’t), and an electric pulse is sent from the battery pack to make them fire. When they do, the diaphragms contract, and this pulls air into the lungs—this is the way we ordinarily breathe, sucking air into a vacuum created as the diaphragms contract, not having air pushed into our lungs, the way a mechanical ventilator operates. Of course, the diaphragm pacer too requires testing: first, a test to see if the phrenic nerve is intact, and the second a test to see if firing the electrodes makes the diaphragms behave. The good news is that this version of the diaphragmatic pacer doesn’t require a big open-chest surgery, just four little laparoscopic slits, and the leads come out through these holes and attach to the battery pack. Then you get to wear the battery pack on a belt around your waist, and if you didn’t feel high-tech enough already, you get to admire this, added to the cardiac pacemaker you already have, the intrathecal indwelling backlofen pump, and now this, the diaphragm pacer. Bionic Man, yes indeed—but it’s all in the interests of breathing better and staying (relatively) free of spasm. Nice, huh?,
There’s other progress as well, though still glacially slow: with his left hand he can touch the thumb to his forefinger, middle finger, and the rest, and can—amazing exercise—squeeze toothpaste out of a tube. He’s starting to work with a hand-operated joystick on his wheelchair, though driving a big and heavy a piece of machinery, especially one that often seems to have a mind of its own, is still a challenge. There’s some movement in his right hand; some in his right toes, and a whisper in his left toes, the furthest behind. But he has a fair amount of force in each leg, and that’s a wonder to all. If you come to visit, especially if there are two of you, you can (under his instruction) pick up his legs and make bicycle movements—that’s where you get a real sense of forward, forward progress, even if it is so torturingly slow.
Thursday, June 4, 2009
Text of Salt Lake Tribune article
A few folks have said they couldn't find the Salt Lake Tribune's story--the first of three. Here it is:
[print story pasted in below. slide show available at
http://166.70.44.68/multimedia/2009/5292009_PeggyBattinMM/index.html ]
Tragic metamorphosis: Ethical debates turn personal for U. prof
End-of-life expert profoundly challenged and much changed when her husband
is paralyzed in a biking accident.
By Peggy Fletcher Stack
The Salt Lake Tribune
Salt Lake Tribune
Updated:05/29/2009 08:24:08 PM MDT
The moment Brooke Hopkins' heart stopped beating, Peggy Battin found herself
in a scene whose ending she had written time and again.
Doctors, nurses and aides swarmed Hopkins' hospital bed, urgently working to
save his life. Battin watched in horror as his eyes rolled back and his face
grew ashen. A burly aide screamed at her to get out, but she didn't budge.
She couldn't leave her husband of more than 20 years. Not now. Not ever.
"Oh, my God," she thought. "This could be it."
It was a time of decision and pain that Battin had described often through
decades of studying the issue of death. Beginning in the 1970s, she was a
pioneer in the field of medical ethics, specializing in end-of-life
questions. Suicide. Euthanasia. Do Not Resuscitate orders. When and how to
die. These were the knotty subjects she debated and discussed in the
classroom and courtroom.
Yet it was always about other cases, other people, other situations.
In one unexpected episode in City Creek Canyon on an ordinary November
weekday, Battin's personal and professional lives collided.
She knew by heart the arguments for not resuscitating fatally injured
patients. She had defended vigorously a person's right to be the final
architect of his own death. Yet she also knew her husband well enough to
believe he would want to live even if completely paralyzed. But what if he
hadn't? Could she have signed a do-not-resuscitate order? Or worse, if he
asked her to help him end his life, could she have done it?
Hopkins' life-altering accident on Nov. 14, Battin says, "has presented me
more than an intellectual challenge to the views I've been defending over
the years. It is a deeply personal, profoundly self-confronting challenge."
Michael Battin has witnessed his mother's metamorphosis.
"Not a single part of her world is the same as it was six months ago," he
says. "It is the most fantastic irony you could imagine."
A quiet day
On that fall morning, 67-year-old Hopkins decided to unwind by riding his
bicycle up the Salt Lake City canyon. The retired University of Utah English
professor had just finished teaching a Mark Twain class to a group of
elderly students and was planning a shindig for them at his home that
evening. He set out about noon after making a giant pot of his famous chili
verde.
Battin had a cold, so she opted to attend a couple of philosophy lectures at
the U. and work in her office. When she couldn't reach her husband on his
cell phone by 5 p.m., she had a fleeting sense of foreboding but dismissed
it.
As she drove up to their Avenues home and saw a police officer talking with
her neighbors, she knew something bad had happened to Hopkins. Yet, somehow,
she also knew he wasn't dead.
"It wasn't conscious," she says. "I just felt it."
Hopkins had collided with another cyclist riding up the canyon as he was
coming down. Hopkins, wearing a helmet, was thrown off his bike and landed
facedown on the side of the road. The other man's bike was destroyed, but he
was not injured.
Within minutes of the accident, an LDS stake president came by, noticed
Hopkins was not breathing and said a prayer. Next came Denise Ward, a
LifeFlight nurse who also works in the respiratory ICU at Intermountain
Medical Center. She turned Hopkins over and began chest compressions while
another passerby performed mouth-to-mouth resuscitation. Hopkins was then
taken to the University Hospital under the name "Trauma Denali," given to
all unknown patients.
After Battin heard the news, she left a note for the party attendees and
drove herself to the U. Medical Center. There she saw the beautiful body she
had loved lying utterly motionless, like Michelangelo's "Pietà ."
Late that night, Battin called her daughter, Sara Battin Pearson, in Seattle
and her sister, Sally Hogenauer, in Long Island, N.Y.
"Oh, Sally," she sobbed into the phone. "Something terrible has happened.
Brooke's had an accident. His neck is broken. He's paralyzed from the neck
down."
Battin's voice revealed a horrible, pleading desperation.
"Do you want me to come out there?" Sally asked.
"Oh, no," Peggy said, suddenly calm. "I'll be OK."
Hogenauer, Pearson, Michael Battin, also of Seattle, and Hopkins' sister,
Lisa Wheeler, all got the same stoic message. They booked flights to Utah
anyway.
Facing death
Four decades earlier, it was another family crisis that prompted Battin's
lifelong interest in end-of-life care.
Her parents, Bill and Peggy Pabst, professionals with doctorates from
Columbia, raised their two daughters to focus on their minds, not their
bodies.
Your stomach hurts, your head aches, your arm stings, you go to school,
Hogenauer recalls. "School was more important than anything."
Young Peggy was programmed from birth to ask questions, to consider the pros
and cons of every situation, right down to what to buy at the grocery store.
If you buy carrots, she would reason, you might have to cook them, while if
you bought cauliflower, you could eat it raw.
"She had a philosophical, intellectual approach to everything," says
Hogenauer. "You don't get things done that way. You just talk about them."
When Peggy was 20 and Sally 18, their mother fell ill. Though they could see
tumors growing out from her ribs, nobody used the word "cancer." It was a
dirty word, unmentionable in polite society.
Instead, people kept telling their mother she would be better in the spring
and that everything was going to be all right.
"The conspiracy of silence continued to the end," Hogenauer recalls. "She
had no chance to say goodbye to anyone."
Battin remembers her mother taking agonizing steps from her bed to the
bathroom, sitting down midway and moaning, "Why does it have to be so hard
to die?"
Their mother's death propelled both girls into their futures: Hogenauer
became a hospice nurse and bereavement counselor. Battin took a more
cerebral path, exploring an individual's right to say when enough is enough.
A natural alliance
Battin arrived at the U. in 1975, armed with a master's degree in writing, a
doctorate in philosophy from the University of California at Irvine and a
one-year appointment. That same year, Hopkins came fresh from Harvard with a
background in 18th- and 19th-century British literature. Both were assigned
to teach the required class Intellectual Traditions of the West.
He was a handsome, lanky outdoor enthusiast, gourmet cook and such a talker.
She was a fair-haired, rigorous thinker, questioning every assumption,
always arguing the opposing point of view.
"We had a ferocious discussion," Battin says of their first exchange, "then
lunch. The rest is, of course, an extraordinary history."
In 1976, the young couple bought a house together and 7-year-old Sara,
Peggy's daughter from a previous marriage, came to live with them. Her son,
Michael, visited on holidays and summers. Hopkins nurtured Sara as his own
and taught young Michael the pleasures of hiking, fishing and camping.
Ten years later, Hopkins and Battin were married in their home, surrounded
by articulate, artistic friends and colleagues. They traveled to exotic
locales, danced all night in undiscovered backwoods blues joints and tasted
every variety of spicy dishes and good wine.
Over time, Battin became a key figure in the emerging national field of
bioethics. She cranked out essays, compiled collections and edited volumes
on death and medicine. Soon she was known for such titles as The Least Worst
Death, Ethical Issues in Suicide and, more recently, Ending Life: Ethics and
the Way We Die.
She helped convince the academic world that applied ethics had an important
role to play in the philosophical arena. Even Battin's prize-winning fiction
drew on real medical cases.
Still, her approach was intellectual, not personal.
Once on a long drive to visit a college in the Northwest, Pearson got a
glimpse of her mother's ambivalence.
"I knew where she stood on every issue, what she was for and against and
why," Pearson recalls. "But for the first time, it became clear that just
because she defended a person's choice for physician-assisted suicide didn't
mean that's the choice she would make for me or my family."
A changed reality
As she paced the hospital halls or huddled with family and friends, Battin
had to figure out how she was going to stitch together a new life with
Hopkins.
What parts of her career could she hold onto? How would she manage all the
new information, deal with doctors, run the household and meet her husband's
emotional needs?
She had to be with him, but also keep her sanity. To that end, Battin
disappeared for hours every day. She took long walks in the hills and shed
20 pounds without even trying. The house was verging on chaos, with sticky
notes of every color plastered around the kitchen and dining room, scrawled
with to-do lists and random thoughts.
When her daughter tried to organize the notes on the refrigerator, Battin
lost it.
"Damn it," she sobbed, "Leave my sticky notes alone."
Not long after the accident, Battin was to speak at a conference in Lisbon,
Portugal. It was important for her career, she felt, but she was conflicted
about going and her children objected. Michael Battin feared Hopkins could
die at any time. Pearson thought she should cancel.
"Mom, you are a trauma patient's wife," Pearson pleaded. "You have to be
there for him."
So conference organizers arranged for her to speak via video satellite, a
welcome compromise.
Now, Pearson has come to realize that those hikes, work and other diversions
have kept her mother grounded.
"I am so impressed with her ability to take this as a new way of life,"
Pearson says. "She's lonely in the house. She misses him, but she deals with
it and keeps going in her own way and in her own world."
Battin's sister also sees a new Peggy -- gentler, more aware of real life.
The two now feel closer professionally and personally.
"There is no question that this is transforming her," Hogenauer says. "It is
humanizing her on many level."
Hopkins sees the changes, too.
"Peggy has become more herself through this," he says through the ventilator
in his breathy baritone. "She has always asked questions, now just asks more
of them, and some that other medical people often don't even think about."
Battin meets every challenge "with aplomb, not to mention her enormous
generosity with other people," he says. "Those things were in her character
to begin with. Now they've become more acute and refined."
In the academy
It has felt at times as if Hopkins' accident undercut everything Battin
thought about medical ethics.
Recently, she was talking with fourth-year medical students and faculty
about a child who needed help eating and breathing. When one student said,
"You'd never want to be on a respirator or with a feeding tube," Battin
thought about how those devices, although invasive, had been saving her
husband's life all these months.
"I felt a distance from these conversations," she says. "I see a lot of
things in a more close-to-the-ground way than I did."
At first after an accident, many people with spinal-cord injuries say they
want to die. Research shows that if they make it to the end of the first
year, most are ready to embrace life as it is. Even in his darkest moments,
Hopkins has never wanted to end his life. He has a fierce desire to continue
on, seeing his limitations as an "adventure."
But what if he told Battin he couldn't go on?
"You can't imagine anything more intensely personal, because I love this
person," she says, her voice cracking, tears in her eyes. "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."
Some years ago, the couple went to see the film "Whose Life Is It Anyway?"
about a paralyzed sculptor who begs to be allowed to die.
"I always swallowed that movie whole, but now I see it in a much more
textured way," Battin says. "Part of me wants to go back and look again at
anything I've ever written. I don't know whether I'd tear it all up. I don't
even know how I would make it more nuanced in academic presentation, 'cause
there's no way to explain it."
In time, Battin's perspective may change and expand in unanticipated ways.
She and Hopkins are documenting the experience on a joint blog and plan to
write a book.
"We have cried a lot together, and that is very therapeutic," Hopkins says.
"We have had to go back and forth and refine our ideas, retelling the story
to one another, and that brings people closer together."
Many relationships fall apart under these conditions, he says. "But our love
has deepened and deepened and deepened."
pstack@sltrib.com
[print story pasted in below. slide show available at
http://166.70.44.68/multimedia/2009/5292009_PeggyBattinMM/index.html ]
Tragic metamorphosis: Ethical debates turn personal for U. prof
End-of-life expert profoundly challenged and much changed when her husband
is paralyzed in a biking accident.
By Peggy Fletcher Stack
The Salt Lake Tribune
Salt Lake Tribune
Updated:05/29/2009 08:24:08 PM MDT
The moment Brooke Hopkins' heart stopped beating, Peggy Battin found herself
in a scene whose ending she had written time and again.
Doctors, nurses and aides swarmed Hopkins' hospital bed, urgently working to
save his life. Battin watched in horror as his eyes rolled back and his face
grew ashen. A burly aide screamed at her to get out, but she didn't budge.
She couldn't leave her husband of more than 20 years. Not now. Not ever.
"Oh, my God," she thought. "This could be it."
It was a time of decision and pain that Battin had described often through
decades of studying the issue of death. Beginning in the 1970s, she was a
pioneer in the field of medical ethics, specializing in end-of-life
questions. Suicide. Euthanasia. Do Not Resuscitate orders. When and how to
die. These were the knotty subjects she debated and discussed in the
classroom and courtroom.
Yet it was always about other cases, other people, other situations.
In one unexpected episode in City Creek Canyon on an ordinary November
weekday, Battin's personal and professional lives collided.
She knew by heart the arguments for not resuscitating fatally injured
patients. She had defended vigorously a person's right to be the final
architect of his own death. Yet she also knew her husband well enough to
believe he would want to live even if completely paralyzed. But what if he
hadn't? Could she have signed a do-not-resuscitate order? Or worse, if he
asked her to help him end his life, could she have done it?
Hopkins' life-altering accident on Nov. 14, Battin says, "has presented me
more than an intellectual challenge to the views I've been defending over
the years. It is a deeply personal, profoundly self-confronting challenge."
Michael Battin has witnessed his mother's metamorphosis.
"Not a single part of her world is the same as it was six months ago," he
says. "It is the most fantastic irony you could imagine."
A quiet day
On that fall morning, 67-year-old Hopkins decided to unwind by riding his
bicycle up the Salt Lake City canyon. The retired University of Utah English
professor had just finished teaching a Mark Twain class to a group of
elderly students and was planning a shindig for them at his home that
evening. He set out about noon after making a giant pot of his famous chili
verde.
Battin had a cold, so she opted to attend a couple of philosophy lectures at
the U. and work in her office. When she couldn't reach her husband on his
cell phone by 5 p.m., she had a fleeting sense of foreboding but dismissed
it.
As she drove up to their Avenues home and saw a police officer talking with
her neighbors, she knew something bad had happened to Hopkins. Yet, somehow,
she also knew he wasn't dead.
"It wasn't conscious," she says. "I just felt it."
Hopkins had collided with another cyclist riding up the canyon as he was
coming down. Hopkins, wearing a helmet, was thrown off his bike and landed
facedown on the side of the road. The other man's bike was destroyed, but he
was not injured.
Within minutes of the accident, an LDS stake president came by, noticed
Hopkins was not breathing and said a prayer. Next came Denise Ward, a
LifeFlight nurse who also works in the respiratory ICU at Intermountain
Medical Center. She turned Hopkins over and began chest compressions while
another passerby performed mouth-to-mouth resuscitation. Hopkins was then
taken to the University Hospital under the name "Trauma Denali," given to
all unknown patients.
After Battin heard the news, she left a note for the party attendees and
drove herself to the U. Medical Center. There she saw the beautiful body she
had loved lying utterly motionless, like Michelangelo's "Pietà ."
Late that night, Battin called her daughter, Sara Battin Pearson, in Seattle
and her sister, Sally Hogenauer, in Long Island, N.Y.
"Oh, Sally," she sobbed into the phone. "Something terrible has happened.
Brooke's had an accident. His neck is broken. He's paralyzed from the neck
down."
Battin's voice revealed a horrible, pleading desperation.
"Do you want me to come out there?" Sally asked.
"Oh, no," Peggy said, suddenly calm. "I'll be OK."
Hogenauer, Pearson, Michael Battin, also of Seattle, and Hopkins' sister,
Lisa Wheeler, all got the same stoic message. They booked flights to Utah
anyway.
Facing death
Four decades earlier, it was another family crisis that prompted Battin's
lifelong interest in end-of-life care.
Her parents, Bill and Peggy Pabst, professionals with doctorates from
Columbia, raised their two daughters to focus on their minds, not their
bodies.
Your stomach hurts, your head aches, your arm stings, you go to school,
Hogenauer recalls. "School was more important than anything."
Young Peggy was programmed from birth to ask questions, to consider the pros
and cons of every situation, right down to what to buy at the grocery store.
If you buy carrots, she would reason, you might have to cook them, while if
you bought cauliflower, you could eat it raw.
"She had a philosophical, intellectual approach to everything," says
Hogenauer. "You don't get things done that way. You just talk about them."
When Peggy was 20 and Sally 18, their mother fell ill. Though they could see
tumors growing out from her ribs, nobody used the word "cancer." It was a
dirty word, unmentionable in polite society.
Instead, people kept telling their mother she would be better in the spring
and that everything was going to be all right.
"The conspiracy of silence continued to the end," Hogenauer recalls. "She
had no chance to say goodbye to anyone."
Battin remembers her mother taking agonizing steps from her bed to the
bathroom, sitting down midway and moaning, "Why does it have to be so hard
to die?"
Their mother's death propelled both girls into their futures: Hogenauer
became a hospice nurse and bereavement counselor. Battin took a more
cerebral path, exploring an individual's right to say when enough is enough.
A natural alliance
Battin arrived at the U. in 1975, armed with a master's degree in writing, a
doctorate in philosophy from the University of California at Irvine and a
one-year appointment. That same year, Hopkins came fresh from Harvard with a
background in 18th- and 19th-century British literature. Both were assigned
to teach the required class Intellectual Traditions of the West.
He was a handsome, lanky outdoor enthusiast, gourmet cook and such a talker.
She was a fair-haired, rigorous thinker, questioning every assumption,
always arguing the opposing point of view.
"We had a ferocious discussion," Battin says of their first exchange, "then
lunch. The rest is, of course, an extraordinary history."
In 1976, the young couple bought a house together and 7-year-old Sara,
Peggy's daughter from a previous marriage, came to live with them. Her son,
Michael, visited on holidays and summers. Hopkins nurtured Sara as his own
and taught young Michael the pleasures of hiking, fishing and camping.
Ten years later, Hopkins and Battin were married in their home, surrounded
by articulate, artistic friends and colleagues. They traveled to exotic
locales, danced all night in undiscovered backwoods blues joints and tasted
every variety of spicy dishes and good wine.
Over time, Battin became a key figure in the emerging national field of
bioethics. She cranked out essays, compiled collections and edited volumes
on death and medicine. Soon she was known for such titles as The Least Worst
Death, Ethical Issues in Suicide and, more recently, Ending Life: Ethics and
the Way We Die.
She helped convince the academic world that applied ethics had an important
role to play in the philosophical arena. Even Battin's prize-winning fiction
drew on real medical cases.
Still, her approach was intellectual, not personal.
Once on a long drive to visit a college in the Northwest, Pearson got a
glimpse of her mother's ambivalence.
"I knew where she stood on every issue, what she was for and against and
why," Pearson recalls. "But for the first time, it became clear that just
because she defended a person's choice for physician-assisted suicide didn't
mean that's the choice she would make for me or my family."
A changed reality
As she paced the hospital halls or huddled with family and friends, Battin
had to figure out how she was going to stitch together a new life with
Hopkins.
What parts of her career could she hold onto? How would she manage all the
new information, deal with doctors, run the household and meet her husband's
emotional needs?
She had to be with him, but also keep her sanity. To that end, Battin
disappeared for hours every day. She took long walks in the hills and shed
20 pounds without even trying. The house was verging on chaos, with sticky
notes of every color plastered around the kitchen and dining room, scrawled
with to-do lists and random thoughts.
When her daughter tried to organize the notes on the refrigerator, Battin
lost it.
"Damn it," she sobbed, "Leave my sticky notes alone."
Not long after the accident, Battin was to speak at a conference in Lisbon,
Portugal. It was important for her career, she felt, but she was conflicted
about going and her children objected. Michael Battin feared Hopkins could
die at any time. Pearson thought she should cancel.
"Mom, you are a trauma patient's wife," Pearson pleaded. "You have to be
there for him."
So conference organizers arranged for her to speak via video satellite, a
welcome compromise.
Now, Pearson has come to realize that those hikes, work and other diversions
have kept her mother grounded.
"I am so impressed with her ability to take this as a new way of life,"
Pearson says. "She's lonely in the house. She misses him, but she deals with
it and keeps going in her own way and in her own world."
Battin's sister also sees a new Peggy -- gentler, more aware of real life.
The two now feel closer professionally and personally.
"There is no question that this is transforming her," Hogenauer says. "It is
humanizing her on many level."
Hopkins sees the changes, too.
"Peggy has become more herself through this," he says through the ventilator
in his breathy baritone. "She has always asked questions, now just asks more
of them, and some that other medical people often don't even think about."
Battin meets every challenge "with aplomb, not to mention her enormous
generosity with other people," he says. "Those things were in her character
to begin with. Now they've become more acute and refined."
In the academy
It has felt at times as if Hopkins' accident undercut everything Battin
thought about medical ethics.
Recently, she was talking with fourth-year medical students and faculty
about a child who needed help eating and breathing. When one student said,
"You'd never want to be on a respirator or with a feeding tube," Battin
thought about how those devices, although invasive, had been saving her
husband's life all these months.
"I felt a distance from these conversations," she says. "I see a lot of
things in a more close-to-the-ground way than I did."
At first after an accident, many people with spinal-cord injuries say they
want to die. Research shows that if they make it to the end of the first
year, most are ready to embrace life as it is. Even in his darkest moments,
Hopkins has never wanted to end his life. He has a fierce desire to continue
on, seeing his limitations as an "adventure."
But what if he told Battin he couldn't go on?
"You can't imagine anything more intensely personal, because I love this
person," she says, her voice cracking, tears in her eyes. "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."
Some years ago, the couple went to see the film "Whose Life Is It Anyway?"
about a paralyzed sculptor who begs to be allowed to die.
"I always swallowed that movie whole, but now I see it in a much more
textured way," Battin says. "Part of me wants to go back and look again at
anything I've ever written. I don't know whether I'd tear it all up. I don't
even know how I would make it more nuanced in academic presentation, 'cause
there's no way to explain it."
In time, Battin's perspective may change and expand in unanticipated ways.
She and Hopkins are documenting the experience on a joint blog and plan to
write a book.
"We have cried a lot together, and that is very therapeutic," Hopkins says.
"We have had to go back and forth and refine our ideas, retelling the story
to one another, and that brings people closer together."
Many relationships fall apart under these conditions, he says. "But our love
has deepened and deepened and deepened."
pstack@sltrib.com
Monday, June 1, 2009
Greece Reunion Party
On May 17th, a group of revelers took over the dayroom at the Davis Rehabilitation Center to celebrate the 10th anniversary of our trip to Greece. In 1999, there were 18 of us from Salt Lake City touring the Cyclades with our guide and scholar, Charlie Frazee. For two weeks we steamed (smoked?) from island to island on our converted, WWII patrol boat. Very tight living conditions but such a convivial crowd that we parted on warm, friendly terms and needed an excuse to share our stories and pictures again.
Claudia Hackworth came up with the reunion idea several months ago and initially planned to have it in her backyard. Since Brooke was unable to travel that far, she brought the party to him. There were naysayers, but she was intrepid and Brooke and Peggy gave her the go-ahead. She coordinated a pot-luck dinner, music and personally turned the day-room into Little Greece, with balloons, flags, columns, photos, etc.
As we were greeting each other and setting out the feast, the nurses would occasionally stroll by to watch the festivities. Of course, there were so many wine bottles they may have been checking to see if they needed to call in a bouncer. (Phyllis brought the Retsina to really get the party started.)
There were 14 of our original group in attendance, plus Claudia's husband, Tim. Brooke was the last to arrive, regal as ever in his self-controlled chair. As has been noted here before, Brooke is still Brooke. The flashing smile and hearty laugh are less frequent but no less startling. And, his "breathy baritone" (quoting from the Trib) still amuses and enlightens.
The party lasted two hours and we were all much embraced--embraced by arms, embraced by eyes and embraced by memories. Thanks for inviting us in, Brooke.
Claudia Hackworth came up with the reunion idea several months ago and initially planned to have it in her backyard. Since Brooke was unable to travel that far, she brought the party to him. There were naysayers, but she was intrepid and Brooke and Peggy gave her the go-ahead. She coordinated a pot-luck dinner, music and personally turned the day-room into Little Greece, with balloons, flags, columns, photos, etc.
As we were greeting each other and setting out the feast, the nurses would occasionally stroll by to watch the festivities. Of course, there were so many wine bottles they may have been checking to see if they needed to call in a bouncer. (Phyllis brought the Retsina to really get the party started.)
There were 14 of our original group in attendance, plus Claudia's husband, Tim. Brooke was the last to arrive, regal as ever in his self-controlled chair. As has been noted here before, Brooke is still Brooke. The flashing smile and hearty laugh are less frequent but no less startling. And, his "breathy baritone" (quoting from the Trib) still amuses and enlightens.
The party lasted two hours and we were all much embraced--embraced by arms, embraced by eyes and embraced by memories. Thanks for inviting us in, Brooke.
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