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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