Knocking on Heaven's Door: The Path to a Better Way of Death (3 page)

I had come to long for the machine in my father’s heart to fail.

How we got there is a long story, but here are a few of the bones.

On November 13, 2001, when he was seventy-nine and appar-

ently vigorous, my father suffered a devastating stroke. A year

later—gravely disabled yet clear-minded enough to know it—

he was outfitted with a pacemaker in a moment of hurry and

hope. The device kept his heart going while doing nothing to

prevent his slide, over five years, into dementia, incontinence,

near-muteness, misery, and helplessness. The burden of his

care crushed my mother. In January 2007, when my father no

longer understood the purpose of a dinner napkin, I learned

that his pacemaker could be turned off painlessly and without

surgery, thus opening a door to a relatively peaceful death. It

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katy butler

was a death I both feared and desired, as I sat at the kitchen

table ten months later, watching my mother’s face as she raised

her head from her knees.

Her words thrummed inside me:
Help me get your father’s

pacemaker turned off.
I’d been hoping for months to hear her

say something like this, but now that she’d spoken, I was the

one with doubts. This was a moral choice for which neither

the Anglicanism of my English childhood nor my adopted Bud-

dhism had prepared me. I shook when I imagined watching

someone disable his pacemaker—and shook even more when I

contemplated trying to explain it to him.

At the same time, I feared that if I did nothing, his doctors

would continue to prolong what was left of my father’s life until

my mother went down with him. My fear was not unfounded:

in the 1980s, while working as a reporter for the
San Francisco

Chronicle,
I spent six weeks in the intensive care unit of San

Francisco General Hospital, watching the erasure of the once-

bright line between saving a life and prolonging a dying. I’d

never forgotten what I’d seen.

If my father got pneumonia, once called “the old man’s friend”

for its promise of an easy death, a doctor might well feel duty-

bound to prescribe antibiotics. If he collapsed and my mother

called 911, paramedics would do everything they could to revive

him as they rushed his gurney toward the emergency room.

With just a little more bad luck, my father might be wheeled

into an intensive care unit, where my mother and I—and even my

dying father—could become bystanders in a battle, fought over the

territory of his body, between the ancient reality of death and the

technological imperatives of modern medicine. It was not how we

wanted him to die, but our wishes might not mean much. Three-

quarters of Americans want to die at home, as their ancestors did,

but only a quarter of the elderly currently do. Two fifths of deaths

now take place in a hospital, an institution where only the desti-

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tute and the homeless died before the dawn of the twentieth cen-

tury. Most of us say we don’t want to die “plugged into machines,”

but a fifth of American deaths now take place in intensive care,

where ten days of futile flailing can cost as much as $323,000. If

my mother and I did not veer from the pathway my father was trav-

eling, he might well draw his last breath in a room stripped of any

reminder of home or of the sacred, among doctors and nurses who

knew his blood counts and oxygen levels but barely knew his name.

Then again, the hospital might save his life and return him

home to suffer yet another final illness. And that I feared almost

as much.

I loved my father—even as he was, miserable, damaged, and

nearly incommunicado. I loved my mother and wanted her to

have at least a chance at a happy widowhood. I felt like my

father’s executioner, and that I had no choice.

I met my mother’s eyes and said yes.

I did not know the road we would travel, only that I’d made

a vow. In the six months that followed, I would learn much

about the implications of that vow and about the workings of

pacemakers and of human hearts, about law and medicine and

guilt, about money and morality. I would take on roles I never

imagined could be played by a loving daughter. I would watch

my father die laboriously with his pacemaker still ticking. After

his death, I would not rest until I understood better why the

most advanced medical care on earth, which saved my father’s

life at least once when he was a young man, succeeded at the

end mainly in prolonging his suffering.

Researching a magazine article and then this book, I would

discover something about the perverse economic incentives

within medicine—and the ignorance, fear, and hope within

our own family—that promoted maximum treatment. I would

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katy butler

contemplate the unintended consequences of medical technol-

ogy’s frighteningly successful war on natural death and its ban-

ishment of the “Good Death” our ancestors so prized. Armed

with that bitter wisdom, I would support my mother when she

reclaimed her moral authority, defied her doctors, refused a

potentially life-extending surgery, and faced her own death the

old-fashioned way: head on.

My mother and I often felt like outliers, but I know now that we

were not alone. Thanks to a cavalcade of relatively recent medi-

cal advances ranging from antibiotics and vaccines to dialysis,

911 systems, and airport defibrillators, elderly people now sur-

vive repeated health crises that once killed them. The “oldest

old” are the nation’s most rapidly growing age group. But death

is wily. Barred from bursting in like an armed man, it wages a

war of attrition. Eyesight dims, joints stiffen, heartbeats slow,

veins clog, lungs and bowels give out, muscles wither, kidneys

weaken, brains shrink. Half of Americans eighty-five or over

need help with at least one practical, life-sustaining activity, like

getting dressed or eating breakfast. Nearly a third have some

form of dementia, and more develop it with each year of addi-

tional longevity. The burden of helping them falls heavily on

elderly wives and middle-aged daughters, with the remainder

provided by sons and husbands, hired caregivers, assisted living

complexes, and nursing homes.

Every day across the country, family caregivers find them-

selves pondering a medical procedure that may save the life—or

prevent the dying—of someone beloved and grown frail. When

is it time to say “No” to a doctor? To say, “Enough”? The ques-

tions surface uneasily in medical journals and chat rooms, in

waiting rooms, and in conversations between friends. However

comfortingly the question is phrased, there is no denying that

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the answer, given or avoided, will shape when and how some-

one we love meets death. This is a burden not often carried by

earlier generations of spouses, sons, and daughters. We are in a

labyrinth without a map.

Before I shepherded my parents through to their deaths, I

thought that medical overtreatment was mainly an economic

problem: a quarter of Medicare’s roughly $560 billion in annual

outlays covers medical care in the last year of life. After my

father’s death, I understood the human costs. After my mother’s

death, I saw that there could be another path.

In our family’s case, the first crucial fork in the road appeared

six years before my father died, in the fall of 2001. It began with

a family crisis, an invitation to a distant daughter to open her

heart, and a seemingly minor medical decision: a pacemaker

proposed in the aftermath of a catastrophic stroke.

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I

Redemption

Jeffrey and Valerie Butler, Yale University,

New Haven, Connecticut, 1990.

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a Blackbird

The King was in his counting house,

Counting out his money.

The Queen was in the parlor

Eating bread and honey.

The Maid was in the garden,

Hanging out the clothes.

Along came a blackbird

And snipped off her nose.

—English nursery rhyme

Until my parents entered their late seventies, my two

younger brothers and I—all of us long settled in Califor-

nia—assumed, when we thought about it at all, that they would

have robust, vigorous old ages, capped by some brief and vaguely

imagined final illness. In my personal fantasy, death would meet

my father suddenly after a happy afternoon in my mother’s gar-

den, blowing leaves into piles with a rented leaf blower.

Slim and energetic, my parents exercised daily and ate plenty of

fish, vegetables, and fruit. Thanks to good doctors and their own

healthy habits, they seemed to be among the lucky ones for whom

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katy butler

modern medicine, despite its inequities and waste, works quite

well. Medicare and supplemental insurance covered their visits to

the occasional specialist and to their trusted internist, a lean and

bespectacled man in his late forties named Dr. Robert Fales. They

didn’t have bodies of iron, like some of the graying triathletes I saw

at my local swimming pool. But they seemed to be enjoying the

thriving, unscathed version of “young old age” that I frequently saw

displayed in newspaper features and in the AARP magazine.

They were also stoics and religious agnostics, skeptical of

medical overdoing. They’d signed living wills and durable power

of attorney documents for health care. My mother, who’d sur-

vived cancer and watched friends die of it, even had an under-

lined copy of the Hemlock Society’s
Final Exit
on her bookshelf.

They had been, by and large, in control of their lives, and they

did not expect to lose control of their deaths.

Then came the stroke, on the afternoon of November 13, 2001.

The day dawned crisp and clear, a Tuesday in late fall, nine days

before Thanksgiving and two months after the attacks on the

World Trade Center. My mother had recently turned seventy-

seven, my father, seventy-nine. They meditated together for

half an hour in the living room and then took their customary

brisk two-mile walk down to the Wesleyan campus to pick up

the day’s
New York Times
from a free rack funded by a wealthy

alumnus. The Leonid meteor shower was expected before dawn

the following Sunday, and they made plans to get up early to

watch the bright rain of shooting stars.

My father helped unload the dishwasher. My mother filled

cereal bowls with muesli, All-Bran, soaked prunes, cashews, and

apricots. In matching blue-and-white saucers she placed a hand-

ful of vitamins recommended by the Center for Science in the

Public Interest, along with a diuretic for her moderately high

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blood pressure and a generic pill for his enlarged prostate. After

breakfast, she headed upstairs to make their twin beds in the mas-

ter bedroom: they no longer shared a bed because of my father’s

snoring. My father went into the second upstairs bathroom—the

one my two brothers and I shared when we were younger—and,

for the last time in his life, took a shower on his own and shaved.

A few hours later, I awoke in the flats of Mill Valley, Cali-

fornia, in the redwood house I’d just begun to share with my

partner, Brian Donohue, whom I’d met in a salsa class a year