Knocking on Heaven's Door: The Path to a Better Way of Death (14 page)

or lower abdomen. . . . There’s nothing natural about the way

they die, as the image of dried leaves falling in late autumn

would impart. This tells us that our medical facilities leave us

no room to think of death.

The dying patient is surrounded by medical staff who,

with its life support systems, has only one thought in mind: to

extend life as long as possible. Next is the family and relatives

who think there’s nothing more important than life. For the

patients confronting death, they wait alone inside that cold

equipment on a stage prepared to struggle against death. But

even if they wanted to prepare themselves for death, there’s no

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one to give them advice, and in that state they die. Even if

they wanted to talk it over with someone, there only returns

the litany of “Gambatte!” (“Hang in there!”).

Not all doctors and nurses were pleased with the changes,

and few other developed countries embraced medical technol-

ogy with quite the gusto of the United States. Fewer ICUs—and

far fewer dialysis units, for that matter—were established in my

old home country, Britain, where funding decisions were made

by regional administrators for the money-pinched and budget-

conscious National Health Service. They faced other claims on

their resources, such as paying the salaries of doctors to provide

good, universal, free primary care, and even employing geriatric

psychiatrists who, as late as the 1990s, made house calls. The

British medical system now costs about half as much as does

the United States’s, but its citizens have better overall health.

A decade after the first intensive care and coronary care units

were established in England, a study in the
Lancet
found that

the new units—whose beeping electronic machines terrified

some patients—conferred “no clear advantage” over home care

for heart attack victims. Another study, published in the
British

Medical Journal,
found in 1976 that patients over sixty and those suffering a first, uncomplicated heart attack did slightly better

at home. Today, about 2 percent of beds in British hospitals are

intensive care beds; in the United States, the figure is more than

11 percent. As a consequence of their relative scarcity, intensive

care beds in Britain are less often the dying-place of the elderly.

In 1968, a decade after Arne Larsson’s first pacemaker and

sixteen years after Zoll saved R.A.’s life with the Physiological

Stimulator, a pathologist named William St. Clair Symmers at

Charing Cross Hospital in London described a troubling case,

a harbinger of thousands to come. Lifesaving machines were

evolving so rapidly and scrambling moral and medical categories

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in such confusing ways that the soft technologies of clinical

practice and common sense could not keep up. The unspoken

maxim had become, “If we can, we must.”

In a letter to the
British Medical Journal
entitled “Not Allowed to Die,” Dr. Symmers described a retired sixty-eight-year-old doctor who’d been admitted to “an overseas hospital” (most likely in

the United States) with a stomach cancer that had fatally metas-

tasized to his lymph, liver, and spine. After one surgery to remove

much of his stomach and another to clear a blood clot from his

lung, the dying doctor-patient asked that “no steps should be

taken to prolong his life, for the pain of his cancer was now more

than he would needlessly continue to endure. He himself wrote

a note to this effect in his case records.”

Two weeks later the desperately ill doctor had a heart attack

while still in the hospital. Five times in a single night his heart

stopped, and five times the emergency resuscitation team

rushed to his bedside and restarted it. Morning found the man

in one of the ambiguous, halfway states being created so fre-

quently by life-support machines that new medical terms—like

persistent vegetative state
and
brain death
—were being invented to describe them.

Resuscitation had kept alive his brain stem—the most primi-

tive, reptilian part of the central nervous system—and it kept

signaling his heart to beat and his lungs to rise and fall. But the

folded rind of his neocortex, the advanced, thinking portions

of his brain, was dead from lack of oxygen. Gone was what we

commonly call the “self,” the personality, or even the soul. The

man’s body was still pink. The skin cells in his earlobes, fingers,

and toes still absorbed oxygen and nutrients and expelled waste

products. His lungs moved in and out, and his beating heart

still pumped blood and oxygen to cells throughout his body. But

he could not easily be described as either living or dead. He

had clenched, turned-in hands and could not speak or move

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or respond to sound. The tools of modern lifesaving had forced

upon him the sufferings of life without its joys and the helpless-

ness of death without its peace.

What was left of the doctor lingered for three weeks, experi-

encing seizures and projectile vomiting. Doctors and nurses fed

him intravenously, gave him blood transfusions, administered

antibiotics to ward off pneumonia, and cut a hole in his windpipe

to keep his airway clear. The man’s heart stopped for the last time

as the hospital team prepared to attach him to a respirator. “This

case report is submitted for publication without commentary or

conclusions,” wrote Dr. Symmers, “which are left for those who

may read it to provide for themselves. . . . The identity of those

concerned and of their country is beside the point.”

My parents, like most people outside the field of medicine, were

virtually oblivious to the moral quandaries arising, beyond the

little that surfaced in an occasional issue of
Time
or
Life
. They were in their forties in the late 1960s, youthful and healthy,

recently arrived at Wesleyan, and busy with other things, like

making new friends, building another Techbuilt, and establish-

ing themselves in Middletown. My mother was in a graduate

program, earning a master of arts in teaching. I was a junior at

Wesleyan, studying Shakespeare and Virginia Woolf and living

off-campus. My brother Michael was at an experimental board-

ing school in upstate New York, and Jonathan was struggling

through a local boys’ Catholic high school, serving as coxswain

for a crew club he’d organized on the Connecticut River and

fixing cars in his spare time.

In the fall of 1970, when my mother was forty-seven and

teaching art at Deep River High School, the surgical advances

pioneered at the Brigham by Francis Daniels Moore may well

have saved her life. She found a lump in her left breast. At Mid-

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katy butler

dlesex Hospital, she was given a radical mastectomy, the drastic

surgical approach then in fashion. The surgeon removed her

breast, much of the muscle of her left chest wall, a hard can-

cerous tumor the size of a walnut, and four cancerous lymph

nodes, including one totally eclipsed by a metastasized second

tumor. This was a sign that cancer cells had drifted through her

lymph fluid and might have spread elsewhere in her body. After

six months of grueling radiation treatments, she drove with my

father to Boston to meet with Dr. Moore at the Brigham. She

was worried about a recurrence.

Francis Daniels Moore was fifty-eight then and still the

Brigham’s chief of surgery. Gray-haired and upright, he counted

advanced breast cancer among his many fields of expertise. He

was aware, as was my mother, of the risks she faced. As he later

wrote in his autobiography, “The stark reality is that almost all

patients who enter this wilderness of advanced disease [that is, a

recurrence after an initial treatment for breast cancer] will die.”

He took substantial time with her, examined her lumpy but non-

cancerous remaining breast, and advised her to have it removed

as well, to be on the safe side. She took his advice and survived

the simple mastectomy he performed. Her cancer never returned.

She had no regrets about sacrificing her breasts for a shot

at saving her life. She was grateful to Moore and to her cancer

support group and her radiation techs for her survival—as well

as to her own formidable life force. But cancer changed her.

She read Aleksandr Solzhenitsyn’s
Cancer Ward
and Elizabeth

Kübler-Ross’s 1969 bestseller,
On Death and Dying.
She looked

her own death in the face.

She photographed herself naked, her scarred and bony chest

exposed to her Nikkormat camera. She developed the negatives

in the darkroom my father had built her, made a few prints,

showed nobody, and filed them carefully away along with the con-

tact sheets. She put up her blonde-streaked hair in her signature

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French twist just as she’d always done, continued to dress impec-

cably, and went out into the world as the beautiful woman she’d

always been. She never had reconstructive surgery, and after a few

years she stopped tucking her sloshy, saline-filled replacement

boobs into her bra, and lived instead as a flat-chested woman.

Instead of returning to teaching art, she ferried more than

one faculty wife stricken by cancer to her chemotherapy

appointments and helped shepherd them and other women to

their deaths. She was glad to be alive, among the lucky ones,

but the more she saw of American medicine at the brink of

death, the more she questioned its tendency to overreach. In

1977, as she was emerging psychically from the shadow of her

own cancer, she spent time with a divorced faculty wife named

Bolly Hassan, who had pancreatic cancer, one of the disease’s

deadliest forms. Bolly was given a surgery called the Whipple

procedure, an eviscerating, last-ditch approach far more radi-

cal than my mother’s radical mastectomy, more damaging to

the quality of a patient’s remaining life, and with real but slim

chances of prolonged success. The Whipple removed the can-

cerous head of Bolly’s pancreas, her entire gall bladder, and a

portion of her small intestine and stomach. What was left of her

internal organs was reconnected to her remaining large intes-

tine. It didn’t work. As Bolly lay dying in the hospital, skin and

bones and barely conscious, a nurse came in once a day to move

her body to a bedside scale for weighing, a pointless operation

that made Bolly whimper, until my mother said to the nurse,

“She’s dying! Can’t you see she’s in pain?” and insisted she stop.

My mother’s disquiet was not unique. The new technologies

seemed to have blunted medical staff to the suffering their proce-

dures caused the dying, and they often postponed death without

restoring health. They created unrealistic hopes of immortality

in some doctors and patients and bred a toxic mistrust between

them that persists to this day. They helped produce doctors of

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katy butler

great technical prowess and limited training in emotional com-

munication. And they brought to light a lack of cultural consen-

sus about the doctor’s evolving moral role near the end of life.

From the plagues of the Black Death during the Middle

Ages through the epidemics of typhoid, cholera, scarlet fever,

and tuberculosis that blighted later centuries, doctors, like their

patients, moved through a world of random, widespread, and

premature death. They understood death as a given throughout

the life span. There was usually little they could do except sug-

gest remedies like port wine, bloodletting, and mercury. So they

sat with the dying in their suffering, predicted the coming of

the final crisis, and waited. They accepted the natural course

of events.

After the mid-1950s, the attitudes of doctors and patients

alike shifted from faith in God and acceptance of death to faith

in medicine and resistance to death. There was always
some-

thing,
no matter how ultimately futile, that
a doctor or nurse could do.

Patients weren’t always grateful. In a small rural hospital

in Virginia in the mid-1970s, a nurse came proudly to the bed

of an elderly woman whose life she’d saved by performing a

cardiopulmonary resuscitation that had cracked two of the old

woman’s ribs. “I will hate you till the day I die,” the old woman

said. “You took away my chance to go to heaven, and on top of