Knocking on Heaven's Door: The Path to a Better Way of Death (11 page)

from. She was in her thirties in the 1950s when my brothers and

I were inoculated with Jonas Salk’s polio vaccine, developed for

the benefit of all humankind and never patented, saving lives by

the millions. She knew medicine had changed since then. She

once said to me, “The whole fifteen-minute game—it’s a joke,

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sweetheart, it’s not medicine!” But she wasn’t the type to come to

an appointment with an Internet printout.

And so the system rewarded nobody for saying “no” or even

“wait”—not even my frugal, intelligent,
Consumer Reports
-

reading mother. Medicare and supplemental insurance covered

almost every penny of my father’s pacemaker even though they

would not cover a cent of a temporary truss that might have

bought us time for an informed decision. My mother asked

more questions and was given more government-mandated con-

sumer information when she bought a new Camry a year later.

There was more. There is a school of thought that maintains

that if patients educated themselves and signed all the right

forms, they’d escape the unhappy medical outcomes that they

dread. But my mother was not just a medical consumer. She

was an agonized, exhausted, and still-hopeful wife. She had

told my father that he was
not
to die first and leave her alone.

She saw his stroke as a setback to overcome, not as the first

loosening of a mooring on a boat that would sail out to sea

without her and sink. “I was not ready for his dying then,” she

would tell me much later, when she came to regret her deci-

sion that day. “I still had hope we could improve things. I hadn’t

really taken in that once you’ve had one stroke, you’re likely to

have another.”

Dr. Fales watched from the sidelines. He knew there were

things worse than dying. His own father had recently been diag-

nosed with Alzheimer’s disease. “If it had been my Dad, I’d have

talked to my Mom and said, ‘It’s time,’” he would tell me later,

after both of my parents were dead. “‘The pacemaker is going

to extend his life into a period when he has no reason to live.

Enough is enough. Let nature take its course.’”

But my mother did not call Dr. Fales.

She shrugged and said yes. The pacemaker surgery was

scheduled for the following week, and she called to let me know.

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I bit my lip. It is one thing to silently wish that your father’s

heart might fail. It’s another to actively abet his death.

The effects of these decisions rippled through our lives for

the next six years.

Dr. Fales, who loved my parents and understood their suffering

far better than Dr. Rogan did, was notified by fax. As he remembers

it, he gave Dr. Rogan a call—a call Dr. Rogan doesn’t remember

getting. “Because the surgeon and the cardiologist went a couple

of extra years in their training, my opinion didn’t weigh in heavily,

even though I knew Jeff better than anyone else,” he told me later.

He worried, too, that if surgery was further delayed, my father’s

hernia might become gangrenous. “That would have been dire,”

he said. “They put Jeff in a bind, and I gave up.”

And had Dr. Fales not given up? Medicare would have effec-

tively penalized him. It would have paid Dr. Fales nothing for

phone calls to the specialists, just fifty-four dollars for a fifteen-

minute office visit with my parents, and only an extra twenty to

forty dollars if he sent in paperwork justifying a longer meeting.

A payment of two hundred dollars for such talks was proposed as

part of health care reform in 2009, but after distortion by a consul-

tant for the conservative Hudson Institute think tank, it was widely

decried as reimbursement for “death panels” and stripped from the

bill. As a result, doctors of all sorts, especially oncologists, are reimbursed well for administering close-to-futile second- and third-line

treatments and reimbursed hardly at all—financially punished, in

fact—if they take the time to explain the case for doing less.

Both Dr. Rogan and Dr. Fales believed that without a pace-

maker, my father would probably not have lived for more than

another two years. His aging heart, Dr. Fales later told me, would

probably have gradually become slower and more arrhythmic. If

he’d been lucky, it would have paused too long one night and

never started again. If he’d been unlucky, he’d have had faint-

ing spells and fallen and broken a hip or even cracked his skull.

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One way or another, his brain, kidneys, and other vital organs

would have slowly failed, starved of sufficient oxygen.

“Finally the heart would have just stopped beating,” Dr.

Fales said. “He would have died peacefully. But nowadays we

don’t get to see this natural course much, because everybody

gets devices.” Not having a pacemaker would not have guaran-

teed my father a quick or easy death. But having a pacemaker

deprived him of his best chance for one.

On the afternoon of January 2, 2003, my father was wheeled

into an operating room at Middlesex Memorial Community

Hospital in Middletown. His chest was numbed with a local

anesthetic. Dr. Jonathan Aranow, a popular local surgeon spe-

cializing in laparoscopic surgery who had trained at Harvard

Medical School and Beth Israel Deaconess hospital in Boston,

made a three-inch cut in the diagonal groove below my father’s

right collarbone and opened his cephalic vein, which runs near

the surface of the skin in the upper arm and leads to the heart.

Guided by the image from a fluoroscope—a sort of real-time

motion-picture X-ray—the surgeon threaded a long, spiraling

wire, called a lead, down the vein and into the apex of the right

ventricle, the lower pumping chamber of my father’s heart.

Next Dr. Aranow inserted a second lead down the same vein

into my father’s right atrium, the smaller upper chamber. Once

both leads were in place, the surgeon fastened the ends of the

wires to the plastic top of the pacemaker’s flat, metallic pulse

generator, which looked a bit like a Zippo lighter. Two weeks

later, he fixed my father’s hernias under general anesthetic.

Medicare paid Dr. Aranow $461 for the forty-five-minute

pacemaker operation, and the hospital a lump sum of about

$12,000, of which the lion’s share, about $7,500, went to St.

Jude Medical of St. Paul, Minnesota, the world’s second largest

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manufacturer of pacemakers, defibrillators, and other cardiac

rhythm devices. St. Jude is a major player in Minnesota’s “Med-

ical Alley,” a thriving cluster of medical technology companies

that includes the behemoth Medtronic.

I cannot tell you precisely what the hospital paid St. Jude

for the pacemaker, and nor could Dr. Rogan or Dr. Aranow. The

hospital told me only that the standard brand was implanted, as

Middlesex is part of a regional consortium of hospitals that nego-

tiates purchases in bulk. The makers of cardiac devices require

hospitals to sign agreements that keep negotiated prices secret

even from the doctors who prescribe the devices. Thus buff-

ered from open competition and the law of supply and demand,

pacemaker prices—85 percent of them picked up indirectly by

Medicare—have declined only slightly over the past half-cen-

tury, in contrast, for instance, to the prices of digital cameras.

Prices vary widely: according to a U.S. Government Account-

ability Office study published in 2012, one hospital paid $8,723

more than another for the same complex cardiac rhythm device.

With threads of fine strong silk, Dr. Aranow sewed the pace-

maker into a pocket of skin below my father’s collarbone. Hid-

den from sight were its electronic innards: a tiny lithium battery,

the electric pulse generator, and a miniscule computer capable

of sensing any variation in my father’s heart rhythm. The first

wire resting in my father’s atrium sensed his every atrial heart-

beat. The second wire delivered a tiny jolt of electric current

to his ventricle whenever the natural beat slowed, keeping the

heart muscle squeezing and synchronized at a steady seventy-

five beats per minute. The little gizmo, one of millions now puls-

ing in hearts around the world, began sending out its signals a

hundred thousand times each day and night. It was a thousand

times lighter, safer, smaller, and smarter than the first device to

continuously pace a human heart, more than sixty years ago.

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and

Transforming Death

The year was 1952; the place, Beth Israel Hospital in Boston.

The internist and researcher Paul Zoll had spent the previ-

ous two years in the hospital’s lab, experimenting with electrical

shocks to stop and start the hearts of dogs. Now he wanted to try

out what he’d learned on a human being. His first patient-subject

was a man who’d been brought to the hospital emergency room on

the brink of death, with the lower chambers of his heart quiver-

ing chaotically. Dr. Zoll applied his experimental shocking device

to the man’s chest in an attempt to stabilize his heart rhythm,

but the patient was already bleeding fatally from a coronary vein

punctured accidentally in a desperate attempt to inject adrena-

line directly into his heart. He died in about twenty minutes.

Zoll’s second patient, known to medical history only as “R.A.,”

was a sixty-five-year-old man with a history of cardiac disease

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whose heart was alternating between periods of standstill and

flurries of rapid, irregular beats. Zoll came to R.A.’s bedside with

a rolling cart holding a bulky off-the-shelf lab appliance, about the

size and shape of a large metal breadbox. Called a Grass Physi-

ological Stimulator, the machine featured a front surface with

rows of switches and dials and a coiled, heavily insulated cord

that split in two before ending in a pair of electrified needles.

Traditionally used in the hospital laboratory to study how nerve

and muscle tissues respond to electrical stimulus, it was capable

of delivering rhythmic, calibrated electric shocks.

Zoll plugged the Stimulator into a wall socket, stuck the two

needle electrodes into the skin of R.A.’s chest, and delivered

130 volts of current. R.A.’s chest muscles convulsed, and the

pulsing currents rippled through the chest wall to his heart. As

long as the shocks continued, R.A.’s heartbeat rhythmically, but

whenever Zoll tried to dial down the charge, the heart stopped.

For six days, the Stimulator paced R.A.’s heart as he ate, car-

ried on conversations, and followed the World Series on the

radio from his hospital bed. Finally his heart resumed beating

on its own, at a slow but steady forty-four beats a minute. Zoll

removed the electrodes, and some days later R.A. went home.

He died ten months later outside the hospital after his diseased

heart entered another flurry of fatally slow heart rhythm.

Zoll wrote up R.A.’s case for the
New England Journal of

Medicine
. The Grass Physiological Stimulator was not a per-

manent solution. But for the first time ever, an electrical device

had successfully managed the beating of a human heart without

requiring a surgeon to cut deep into the chest wall.

Over the next three years, devices like the Grass Physiologi-

cal Stimulator, made by a company called Electrodyne, brought

more of Zoll’s desperate patients back from the brink. But many

were not as lucky as R.A. The Stimulator was an emergency

device—a crude, clunky, hospital-based “bridge” technology

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intended to carry a patient over a brief crisis. For those whose

hearts never resumed a normal rhythm, it offered a poor substi-

tute for living. Tethered to electrical sockets and lying in hospi-

tal beds, these experimental Lazaruses sometimes grimaced as

they suffered the Stimulator’s intense repeated shocks and the

powerful, involuntary chest contractions the shocks provoked.

Sometimes the device burned and blistered the skin. Children

subjected to it cried and screamed through heavy sedation.

In 1955 or 1956, about three years after R.A.’s miraculous

revival, a group of interns and residents at Beth Israel visited the

room of a chronic heart patient who “had been on an external Zoll

pacemaker for a long period of time,” in the words of the late Sey-

mour Furman, then an intern and later a leading cardiac surgeon.