Knocking on Heaven's Door: The Path to a Better Way of Death (10 page)

of fat and tissue, making painful humps beneath the skin. The

humps—technically known as inguinal hernias—were easily fix-

able with the latest laparoscopic surgery, to be performed under

general anesthesia. Dr. Fales recommended a truss to temporar-

ily ease the pain, but my mother balked because its two-hun-

dred-dollar cost was not covered by Medicare. Time was of the

essence: without a surgical fix or at least a truss, a loop of small

intestine might get pinched or “incarcerated” in the wall of my

father’s abdomen, lose its blood supply, and develop gangrene. In

my ignorance, I figured that a hernia repair was too minor to war-

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rant my dropping work and making a trip east. Only later would I

understand that there is no such thing as minor surgery—or any

minor procedure for that matter—for the very old and frail.

Dr. Fales referred my father to a local general surgeon, who

sent him to a cardiologist for a preoperative clearance. On the

day after Christmas, a little more than a year after the stroke,

my mother drove my father down to the Connecticut shore for

an urgent appointment with Dr. Rogan of Middlesex Cardiology

Associates. Dr. Rogan was fifty-two, a mild-mannered man with

dark hair and a receding hairline, a graduate of the University

of Massachusetts Medical School, and a Catholic. His clinical

notes would describe my father as “a pleasant South African

gentleman” who “fought for the British in WWII and lost his

left arm to a mortar blast in the Italian campaign.” Years later he

would write me a letter describing how much he’d liked him.

Dr. Rogan saw nothing unusual in my father’s clinical case.

He ran an electrocardiogram and discovered that at rest, my

father’s aging heart beat only thirty-five times a minute—a little

more than half the rate of most healthy young people. Techni-

cally known as “asymptomatic bradycardia,” my Dad had had

the condition for at least six years. It is common among the very

athletic and the very old. Many Olympic endurance athletes

have slow resting heart rates because their large, efficient hearts

pump large volumes of oxygen-saturated blood to their muscles

during contests and then slow down radically when at rest.

My father’s heart was slow because he was eighty.

His heart’s natural pacemaker, a comma-shaped bundle of

nerve fibers called the sinoatrial node, had, in the process of

normal aging, lost much of its firing power. Perched near the

top of the upper-right chamber of the heart, the sinoatrial node

is about the size of a pencil eraser. Day and night, from birth

to death, it spontaneously fires a tiny electrical charge, pauses,

gathers itself, and fires again. The signal pulses down through

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heart muscle and nerve fibers to the ventricles, the twin major

lower pumping chambers, cueing them to squeeze blood out

into the arteries for transport to all the limbs and vital organs.

By the age of seventy-five, the sinoatrial node has often lost as

much as 90 percent of its cells through a natural process of

aging and cell die-off. Nerve cells elsewhere in the heart’s elec-

trical conduction system have thinned out as well.

My father’s slow heartbeat had first revealed itself in 1994,

during a routine electrocardiogram at his internist’s office. Some-

times the signals pulsing from his sinoatrial node took a few

extra seconds to reach the lower chambers. Sometimes his heart

paused between beats. Once in a while it missed beats altogether,

a pattern cardiologists call a Wenckebach rhythm. But despite

the wrong sort of squiggle on the electrocardiogram—a pattern

that Dr. Rogan called “first degree heart block” and “Sick Sinus

Syndrome”—my dad had never fainted or gotten dizzy or showed

any other sign of heart trouble, aside from an occasional puffy

ankle. If he’d grown old before the pacemaker was invented,

nobody would have called his heart diseased—just worn out.

Dr. Rogan looked at the tests and decided that my father

needed a pacemaker. Without a “pacer,” he said, my father’s

heart might stop under the stress of general anesthesia dur-

ing the hernia surgery. A sense of urgency, combined with the

assumption that the treatment offered has no alternatives and

no downsides, are common ingredients in medical decisions,

later regretted, involving the fragile elderly. It was the second

time that Dr. Rogan had seen my father, and the second time

he’d recommended a pacemaker.

Dr. Rogan had first examined my father a year earlier, in Novem-

ber of 2001, just weeks before the first stroke, after my father’s

gastroenterologist became alarmed by my Dad’s slow heartbeat.

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Dr. Rogan had told my Dad then that he “did qualify for a pace-

maker,” even though cardiology treatment guidelines did not

actually recommend one for asymptomatic bradycardia. In a

later letter to me, Dr. Rogan would call my father’s case then “a

grey zone to be sure, and not fitting neatly into the guidelines.

I felt he should consider a pacer before any major symptom,

thinking it inevitable he would need one.”

My then-vigorous and intact father told Dr. Rogan that he

wasn’t interested unless a pacemaker was absolutely neces-

sary—and nor was his internist, Dr. Fales, who considered it

overtreatment. Dr. Rogan made plans nevertheless to hook my

father up to a portable Holter cardiac monitor, a portable strap-

on electrocardiograph that can record the heart rhythm twenty-

four hours a day. The longer test period might have uncovered

further rhythmic oddities and strengthened the case for a device.

But before the Holter test could take place, my mother had

called Dr. Rogan’s office in tears to say my father had had his

first stroke.

At about the same time that Dr. Rogan first broached the idea

of a pacemaker, a cardiologist in Italy named Alberto Dolara was

promoting a new clinical approach he called “Slow Medicine.”

Fast medicine, like fast food, he wrote in an internationally

influential essay published in a leading Italian cardiology jour-

nal in early 2002, often involved a barrage of rapidly prescribed

tests and treatments—fixing rather than healing. Slow medi-

cine, like slow food, valued restraint, calm, and above all, time:

time to weigh the emotional and physical costs of medical treat-

ment; time to evaluate new methods and technologies; time, as

the end of life approached, to stop frenetic doing and to take

care instead of the broader needs of patients and their families.

Excessive eagerness to act, Dolara wrote later in English in

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Acta Cardiologica,
can result in “premature timing in surgery, too much enthusiasm for new technologies, exaggerated emphasis

on tests . . . and scarce attention to the needs of patients.” “To

do more,” wrote one of his Slow Medicine colleagues, Fran-

cesco Fiorista, elsewhere, “is not necessarily to do better.”

The Italian doctors were part of a quietly emerging medi-

cal counterculture drawing mainly from such money-starved

and unglamorous domains as geriatrics, palliative care, internal

and family medicine, and hospice care. If the movement had a

birth date, it was probably 1967, when an English nurse named

Cicely Saunders opened the first modern hospice, St. Chris-

topher’s, in London, with the goal of treating a patient’s “total

suffering” rather than trying to extend life. In many ways, Slow

Medicine represented not an advance, but a return to ancient

ways of doctoring

Even though the Slow Medicine movement—which broadly

speaking emphasizes patient-centered care, unrushed medical

decisions and “care over “cure”—was quietly mushrooming, its

philosophy was easy to ignore amid the clangor of better-funded,

high-tech medicine, with its dramatic fixes and sometimes

exaggerated hopes. The Italian doctors were in the minority—

especially among cardiologists—but they were not outliers, and

nor was my medically cautious father. Some studies suggest

that patients are more likely than their doctors to reject major

elective surgery when fully informed of pros, cons, and alterna-

tives—information that nearly half of patients say they don’t get.

And although Dr. Rogan assumed that it was an unbridled good

thing to extend my father’s life, nearly a third of the severely ill

and dependent don’t feel that way. In a 1997 study in
The Jour-

nal of the American Geriatrics Society,
30 percent of seriously ill people surveyed in a hospital said they would “rather die” than

live permanently in a nursing home—a preference that neither

their doctors nor their close relatives were much good at pre-

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dicting. In another study, 28 percent of people with congestive

heart failure said they’d trade a single day of life in excellent

health for two years of survival in their current condition.

When my parents met with Dr. Rogan in late 2002, with my father

now stroke-damaged and in pain from his hernias, they had unwit-

tingly arrived at an unmarked crossroads where even the most

seemingly routine medical decisions become fraught and sacred.

Assumptions that went unquestioned when my Dad was whole

and vigorous—when “saving his life” meant more than exchanging

one pathway to death for another—were starting to shift. The deci-

sion that day was not simply
how
or
when
to treat, but
whether.
My parents were contemplating more than a pacemaker. They were

contemplating how much suffering they would bear in exchange

for more time together on earth. And they did not know it.

At this crossroads, each miraculous life-extending technol-

ogy pulls up from the depths a tangle of our most deeply held

and unarticulated moral questions and puts them under a halo-

gen light. How grateful are we for the gift of life and what are

we willing to undergo for more of it? Would we rather die too

soon or too late? How do we make sense of the loss of human

bonds that death brings even to those who believe in heaven?

Does a caregiver’s suffering have moral standing? Can a daugh-

ter express her love for her father by doing all she can to let him

die, or is that an expression of her selfishness and buried hate?

What would my father have said that day at Dr. Rogan’s

office if the pacemaker had been discussed as a choice-point

rather than a necessity? What if Dr. Rogan had told him that its

battery would last ten years? What would my mother have said

if the doctor had asked her how she was coping with caregiving

or asked my father whether he felt his life was still worth living?

I do not know. Dr. Rogan was a specialist in heart rhythm,

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not in geriatrics, psychiatry, or family medicine. He told me later

that he did not take gifts from medical sales representatives, he

clearly cared about his patients, and his approach to my father’s

case conformed to accepted medical practice. He was simply

tightly focused on one fixable piece of my father’s problems. If

he hadn’t suggested the pacemaker and something had gone

wrong, our family could even have sued him for negligence for

failing to meet the “standard of care” in our local community.

He was presented with a wife—my mother—who knew how

to keep up appearances. My father could not easily follow an

animated dinner-table conversation then, much less talk with

a near-stranger about how he wanted to die, or live. And in my

parents’ eyes, I was just a daughter with problems of her own on

a faraway coast: struggling to earn a living, growing warily closer

to a new man, and negotiating a sometimes fraught relationship

with his two nearly grown sons, who were accustomed to having

the run of their father’s house.

My mother was not a compliant or stupid woman. She wasn’t

enthusiastic about the pacemaker and she knew that their inter-

nist, the trusted Dr. Fales, opposed it. But she was anxious to get

my father out of pain and was no expert on high-tech medicine.

In the course of her long life, she’d usually believed what doctors

told her, and on the whole it had worked out well. She grew up

in times when almost all doctors practiced what the Italians had

taken to calling Slow Medicine: they made house calls, earned

incomes roughly equal to those of their patients, served the same

families for decades, didn’t get gifts from drug and device sales-

men, and didn’t prescribe technologies they indirectly profited