Knocking on Heaven's Door: The Path to a Better Way of Death (12 page)

“After a pep talk which the house staff, myself included, had given

the patient about the wonders of the future to come, which we

didn’t believe and he equally didn’t believe,” Furman said later, the

house staff left the room and the man “committed suicide by turn-

ing off the switch.” It was the first known case of a patient refus-

ing to submit to a life-extending cardiac machine—not a suicide

exactly, but a relatively new moral act, one without its own name.

Such stories rarely reached the popular press, however, and they

weren’t the dominant notes. The mood of postwar America—

including that of my own newly arrived, immigrant family—was

optimistic, self-confident, iconoclastic, and fascinated with sci-

ence. Faith in rationality, progress, and unbridled human experi-

ment rivaled that of the Renaissance and the Enlightenment.

When my family disembarked from the
Queen Elizabeth
on the

docks of New York in 1957 and searched for the trunks holding

my teddy bear and my father’s typewriter, Dwight Eisenhower,

a World War II military hero, was president. The economy was

booming. After seven years of austerity in England, we Butlers

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were making a fresh start in a brash young nation, set to build on

the technological advances catalyzed by the Second World War.

My father had found a job teaching in the African Studies

program at Boston University. We rented a house in the suburbs

with central heating, our first television, and a large unfenced

yard. Our family stopped going to church. We bought a sec-

ondhand Buick that drove like a sofa, which my mother guided

nervously down the new American superhighways, funded by

an expanding federal government, to a supermarket where, to

her amazement, she could buy oranges, dish soap, and frozen

chicken under one enormous, brightly lit roof. After three years

of renting, my parents bought land on the edge of a lake and

decided to build a radically modern house with huge glass win-

dows, a house a bit more expensive than they could afford.

Bulldozers brought in fill, and a concrete mixer poured its

gray sludge into the foundation forms. The walls and windows

came in pieces on a truck—giant panels of redwood and glass,

like something from California, erected in days like a house of

cards. It was basically a box with a peaked roof, ample light, lots

of sliding glass, a single bathtub, and four small upstairs bed-

rooms nestled under the eaves, but to us it was grand. Inspired

in part by Frank Lloyd Wright’s moderately priced Usonian

House, our new home, called a Techbuilt, was an attempt to

bring Bauhaus design to the masses. Costs were kept down

with modular construction, an open plan in the downstairs liv-

ing spaces, and a dearth of fine lines and carpenter’s trim. The

neighbors, in their reproduction Colonials, were shocked.

To save money, my parents acted as their own general con-

tractors, hiring electricians and plumbers and doing much of the

rest of the work themselves. On weekends and in the evenings,

my father, who was also teaching full time in Boston and racing

to rewrite his Ph.D. thesis, joined my mother in hanging Sheet-

rock, mudding joints, and painting walls. When it came time to

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tile the bathroom, my mother went off alone to a half-built hous-

ing development, watched the professional tilers at work, and

came home and did the same things herself. I thought there was

nothing she couldn’t do.

My new bedroom window looked over the lake, and my

brothers and I spent the summer there, sailing a secondhand

Sailfish with a boldly striped, lateen-rigged sail woven out of

Dacron, another radical modern innovation. We had little

money for furniture, but my mother splurged, at a store called

Design Research in Cambridge, on a Japanese lamp designed

by Noguchi, a zigzagging column of bamboo, paper, and light,

which she hung in a corner of the bare cork-floored living room,

near two butterfly chairs, a cheap, black, foam-filled couch, and

a mosaic coffee table that she and my father built from a kit

from the Door Store. Even her coffeemaker was modern and

scientific: an hourglass-shaped beaker called a Chemex that

looked like something from a chemistry lab.

John Kennedy was elected president. The
Jetsons
cartoon

show premiered on television. NASA vowed to put a man on the

moon, and Congress ordered the National Institutes of Health

to fund the development of an entirely artificial heart.

All over the United States and in Europe, buoyed by the same

postwar spirit doctors and inventors, working in garages and sheet

metal shops and hospital labs, were cobbling together new medi-

cal contraptions and surgical devices from washing machines,

vacuum cleaners, cattle watering tubs, glass tubing, orange-juice

cans, and sausage casings. Materials invented or pressed into

military service during the Second World War—nylon, Dacron,

silicon, plastics—were put to miraculous new civilian uses.

In 1960, the year our family moved into the Techbuilt, a

young kidney doctor in Seattle, experimenting with a slippery

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plastic called Teflon, created a nonclotting U-shaped shunt

that could be left permanently in a patient’s vein, thus turning

dialysis—a wartime invention—from an emergency lifesaver

into a routine though expensive and debilitating treatment. The

same year, a trio of doctors and researchers at Johns Hopkins

Hospital in Baltimore announced in the
Journal of the American

Medical Association
that they had successfully restarted hearts that stopped beating under anesthesia by pressing rhythmically

and repeatedly on the breastbone, thus paving the way for wide-

spread use of cardiopulmonary resuscitation, or CPR.

We were in the midst of a revolution in medicine, one qualita-

tively different from any that had come before. The easy battles

had been won. The mass conquests of microbes and viruses were

mostly behind us. In their ongoing war against death, doctors

were turning to new frontiers: the repair, restarting, and even

replacement of human organs once considered sacred, vital, and

inviolable.

One epicenter of the new revolution in medicine was Peter

Bent Brigham Hospital, one of Harvard Medical School’s flag-

ship teaching and research institutions, located not far from my

father’s office in Boston’s Back Bay. There, under the leader-

ship of an aristocratic and charismatic chief of surgery named

Francis Daniels Moore (who later became my mother’s breast

cancer surgeon and possibly saved her life), doctors spent the

mid-twentieth century in an orchestrated frenzy of daring human

experimentation. Some surgeons used sterilized Dacron cut from

used boat sails to patch ballooning aneurysms that threatened to

fatally burst the walls of weak aortas, the giant arteries that carry

red, oxygenated blood from the heart to smaller blood vessels

throughout the body. Others, in the days before the phenomenon

of organ rejection was understood, carried out experiments—

almost all of them unsuccessful—in kidney transplantation.

The pioneering heart surgeon Dwight Harken drew on the

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katy butler

experience he’d gained in the summer of 1944 (as other doc-

tors were saving my father’s life in Italy), when he’d boldly

pulled shrapnel from the pulsing hearts of more than a hundred

wounded soldiers in England, breaking a long-standing medical

taboo against surgically invading the heart. At the Brigham in

peacetime he went further, using his fingers and crude crochet-

hook-like tools to break open the stiff, scarred mitral heart valves

of young women condemned to invalidism and early death by

childhood rheumatic fever, a then-commonplace inflammation

of the heart caused by strep infections before the use of antibi-

otics was widespread. Harken’s statistics were dismal at first: six

out of ten of his first heart-valve patients died on his Brigham

operating table or soon afterward. Among those who died were

some who could have lived restricted lives for years without sur-

gery. But as techniques improved, Harken saved many lives.

In other operating rooms at the Brigham, early results were

equally grim, as surgeons cut out some patients’ adrenal glands

in a futile effort to control their dangerously high blood pressure

and performed brain surgeries to remove the pituitary glands

from women with metastasized breast cancer in hopes of slow-

ing its spread. (The women were left with brain damage on top

of their still-fatal illnesses.) In time, of course, the experiments

led to amazing victories: immune-suppressing drugs were dis-

covered, kidney transplants saved thousands of lives, and sur-

vival rates for all sorts of surgeries improved radically as a result

of Francis Moore’s research. But at a cost.

The Brigham’s Harvard faculty doctors were well-educated,

often upper-class men like Moore; their patient-subjects were

mostly working-class Italian-Americans and Irish-Americans from

South and North Boston getting the charity care that the hospi-

tal had been founded to provide. There were no guidelines then

for experiments on human subjects, and some patients quietly

complained to the anthropologist Renée Fox that they had been

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oversold on the potential benefits of their surgeries, and underin-

formed of their considerable risks. Some young doctors refused

to participate altogether in what they called “murders” at the

Brigham. A specialist in medical ethics warned against the “tri-

umphalist temptation to slash and suture our way to eternal life.”

But the experiments continued nonetheless, cheered on by

an enthusiastic popular press. In 1963—a year before my father

got the job he loved at Wesleyan and moved our rootless family,

for the final time, to Middletown—
Time
magazine put Moore

on its cover as a symbol of the bold, new medical era, celebrat-

ing his extensive research into making surgery safer. “With their

new machines and new skills, surgeons know practically no limits

to the range of patients they can help,” the
Time
story read. It did not mention that that year, all nine Brigham patients who

received experimental liver transplants died prolonged and horri-

ble deaths, nor that Moore had quietly ordered them abandoned.

Moore later called that time “the black years,” but he never

publicly disavowed the work he and others had done. “The

patients selected were going to die shortly,” he wrote of the first

kidney transplantations, “[and] this experiment was being under-

taken under the most ideal and favorable circumstances, with

conscientious recording of every detail. Whatever criticism we

have endured regarding the ethics of these early efforts as viewed

in terms of present-day mores 40 years later, the fact is that if

nothing is ventured, nothing is won.” Moore’s statement repre-

sented a revolution in attitudes toward the fatally ill: they were no

longer souls in transition but experimental subjects whose medi-

cally prolonged suffering was justified by the hope of advancing

scientific knowledge for the benefit of future patients.

Dwight Harken was among many Brigham doctors who

looked back on the early deaths with something close to horror.

When one of his early heart patients died, Harken said, the pain

he felt was “different than the pain of losing one’s patient under

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katy butler

standard circumstances. . . . then somehow we blame fate, the

Creator, or the disease with that failure. But when we’ve created

the vehicle of death, the bridge to destruction for our patient,

that’s another kind of pain—the pain of the pioneer.”

Meanwhile, in the operating rooms of Variety Club Heart Hos-

pital in Minneapolis, Minnesota, a daring young surgeon named

Walt Lillehei was conducting experiments of his own. Sometimes

described as the “father of open-heart surgery,” Lillehei spent the

1950s specializing in so-called “blue babies”—listless children

with clubbed fingers and a blue tinge to their skins, otherwise

doomed to an early death by congenital holes between the cham-

bers of their hearts that allowed red oxygenated and blue deoxy-

genated blood to intermix. Lillehei would cool the child’s body

in a metal cattle feeding trough filled with ice, practically to the

point of a state similar to hibernation, and then stop the heart