Knocking on Heaven's Door: The Path to a Better Way of Death (28 page)

follow-up study (the RARE trial), and paid one of the doctors

named as a lead investigator to travel to the annual meeting of

the Heart Rhythm Society, the cardiac device specialist’s group,

and present the findings as if they were his own in a scientific

poster session in the exhibit hall.

Donigian said that St. Jude planned to spend $158 million on

educational and career guidance programs for “fellows,” young

cardiologists training in electrophysiology, the subspecialty that

manages cardiac devices. An internal marketing document esti-

mated that each of the one hundred fellows who became a full-

fledged electrophysiologist and conservatively prescribed St.

Jude products could generate $2.7 million in device sales a year.

After the Justice Department joined the case, St. Jude, without

admitting wrongdoing, settled the lawsuit in early 2011 for $16

million, of which Donigian received $2.6 million. The Code of

Business Conduct on the St. Jude Web site stated that sales-

people’s gifts to doctors should not be “extravagant” or “beyond

that which is customary,” but those terms were not defined.

In 2008, a year after Donigian quit, the American College of Car-

diology, the Heart Rhythm Society, and the American Heart Asso-

ciation issued the latest update of their treatment guidelines for

pacemakers. The list of diagnoses for which they were strongly

or mildly recommended had grown since the guidelines were

first issued in 1984. The 1984 guidelines had recommended

pacemakers for fifty-six heart conditions. The 2008 guidelines

recommended them for eighty-eight. The research backing the

expansion was weak, with only 5 percent of the positive recom-

mendations backed by medical research’s “gold standard”: mul-

tiple randomized double-blind studies. Most were based only

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katy butler

an a consensus of “expert opinion.” Of the seventeen cardiolo-

gists who wrote the 2008 guidelines, eleven received financing

from cardiac device makers or worked at institutions receiving

it. Seven, due to the extent of their financial connections, were

recused from voting on the guidelines they helped write.

This pattern—a paucity of scientific support and a plethora

of industry connections—held across almost all cardiac treat-

ment guidelines, said cardiologist Pierluigi Tricoci of Duke

University and his coauthors in an article in the
Journal of the

American Medical Association
published in 2009. “Experts are

as vulnerable to conflicts of interest as researchers are,” they

wrote, and added that the current cardiac research agenda was

“strongly influenced by industry’s natural desire to introduce

new products.”

That desire would be on full display in the spring of 2011, two

years after my father’s death, when I parked in a municipal park-

ing garage on Mission Street near the
San Francisco Chronicle,

my old newspaper, and walked toward the Moscone Convention

Center, where the Heart Rhythm Society was holding its annual

conference. It was a sunny, windy day in the South of Market

district. The first thing that caught my eye was a fleet of black

motorcycles repeatedly circling the block, each one towing a

shiny black mini-trailer bearing the logo of St. Jude Medical.

(“More Control! Less Risk!”) Towering above me on the side

of a two-story building were five orange, turquoise, blue, and

purple billboards, each bigger than a movie marquee, trumpet-

ing the behemoth Medtronic’s implantable cardiac defibrilla-

tors (“Fewer Shocks! MRI Access!”), its surgical tools for a heart

procedure called cardiac ablation (“Inflation/Ablation!”), and

its corporate logo (“Innovating for Life!”). A commercial white

stretch limousine idled by the curbside, trolling for customers.

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Outside the convention center, the sides of official shuttle

buses were covered with company logos. Inside the hall were

more logos—for Biosense, Johnson & Johnson, Siemens, Zoll,

and Greatbatch—plastered on water coolers, on piles of com-

plimentary tourist maps of San Francisco, on Internet access

booths, and above laptop charging stations. A sign above the

couches of the Infinity Circle, where tired cardiologists checked

their e-mail read, “Year Round Support: Infinite Gratitude: Heart

Rhythm Society,” followed by a list of its top corporate contribu-

tors, including Medtronic, Boston Scientific, St. Jude Medical,

and Sanofi Aventis (“Because Health Matters”). All told, medical

technology companies paid the Heart Rhythm Society $5.1 mil-

lion—nearly a third of its $16.8 million annual budget—to rent

exhibit booths and otherwise promote themselves to the more

than three thousand physicians attending the four-day conven-

tion. This was the sea in which cardiologists swim.

St. Jude Medical, the maker of my father’s device and the

conference’s third-biggest spender, paid $653,000, including

$15,000 for ads on the risers of stairs, $45,000 for the privi-

lege of hosting complimentary dinner-seminars and other edu-

cational events for doctors in hotel banquet rooms, $55,000 to

hang banners above stairways, $70,000 to put its logo on the

cardiologists’ hotel key cards, and $308,000 for exhibit booth

space on the showroom floor. The company was on
Fortune
’s

list of the world’s most admired companies. It employed about

1300 sales representatives, and was a member of the Fortune

500, with a market capitalization of $13 billion.

Wearing my press badge and carrying the complimentary

tote bag I was handed in the well-stocked press room, I walked

into Moscone’s huge underground commercial exhibit hall. It

reminded me of a cross between a carnival midway, an auto

showroom, and the largest Apple store on earth. Everywhere I

looked, flat screens glowed and pulsed, displaying loops of med-

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katy butler

ical technology advertising. The average American life span was

now seventy-eight and a half, and health care was consuming

17.9 percent of America’s GDP per year. Salesmen and sales-

women with expensive haircuts circled clutches of slim, vital

doctors in sharp dark suits. Suspended above our heads in the

hangar-like space were gigantic plastic signboards in whites and

cool blues and greens, reading, “St. Jude Medical,” “Medtronic,”

and “Biotronik: Excellence for Life.”

A kind and handsome sales engineer at the St. Jude Medi-

cal booth—it wasn’t a booth, really, it was at least four times

the size of my living room—handed me a pacemaker much like

the one Dr. Aranow had tucked into the pocket of skin beneath

my late father’s collar bone years before. It was flattish, roughly

ovoid and encased in titanium, the color of dull silver. About the

size of a pocket watch, it looked a little like a silver dollar that

had been flattened on a railroad track. “St. Jude Medical, TM,”

was engraved on its side, along with the location of the factory

where it was made: Sylmar, California. It fit into my palm.

I closed my hand around the tiny little machine that had

saved many a life, made many a fortune, and led my family to so

much unnecessary suffering.

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In the spring of 2007, when my father was eighty-four, incon-

tinent, wobbly, sleeping for hours during the day, and virtually

confined to the house, Brian and I went to England on vacation.

One day I took a bus alone to 21 Thorncliffe Road, the little

brick and gray stone row house where my father told me stories

in front of the fire when he was a student at Oxford and I was a

little girl. I rang the bell. A young mother, a renter, let me take

a look around the ground floor. It was much as I remembered

it except for an updated kitchen: a scattering of children’s toys,

a few small rooms, a strip of walled back garden that no longer

sported an apple tree. When I got home, I sent my father a copy

of the photo she’d taken of me standing by our old front door.

To my right, between our flagstone path and the neighbor’s, was

a low unremarkable brick wall. In May I opened an almost illeg-

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katy butler

ible letter, in miniature handwriting, the last my demented and

partly blind father would ever send me. I puzzled it out letter by

letter and focused on the few sentences I could fully decipher.

This is exactly how it read.

Dear Katy,

Thank you for the letter letter from Oxford. The old adges

from from the old old from Thorncliffe road is really splendid

remiddedid and other little made me me this letter made me

me on still setle.

I did that wall and sill when you were tiny thing.

I took out the photograph and looked at the brick wall. I

could remember my one-armed father, black-haired, strong

and whistling, building that wall on a Saturday morning in the

1950s: making a neat pile of his bricks, rigging up a horizon-

tal white string to keep his rows aligned, and troweling up his

cement on a plywood square.

When your number when you were and I and it was.

I see in the photgraph who took. I see. I made the lwiting

wrad and its its still up there.

So it stands for all those years. Thank you for the toast post.

It really is a joy.

all my love, Jeff.

Every day, my mother said, he lost yet another word, practi-

cal skill, or memory. Once he’d needed her care hour by hour.

Now he needed her supervision minute by minute. In her jour-

nal, she wrote of my father’s “slow but progressing dementia. . . .

I am so weary of his problems and wish I had a life of my own.”

Later I would learn that my father had reached stage five or six

of dementia’s seven roughly sequential stages. It is a terminal ill-

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183

ness, and in the seventh, final stage, people forget how to walk,

smile, swallow, eat, or breathe. My mother had come round to my

view of the pacemaker. “We all in the family wish,” she wrote in

her journal, “that the pacemaker had not been put in at all.”

Meeting once a month at a coffee shop on Main Street and

in each other’s kitchens, my mother and three other Middle-

town women caring for impaired and dependent husbands had

formed their own support group. One was a financial planner

in her seventies still working full time to cover her husband’s

nursing home bills. Another was caring for her husband, a

retired artist with Parkinson’s still living at home. The third was

a college professor whose husband, also at home, had early-

onset Alzheimer’s and could not speak. They and my mother

exchanged tips on nursing homes and caregivers and adult day

care programs and they wept together after reading a journal

article I sent my mother on ambiguous loss. One night they

held a potluck at my mother’s house, the women chatting volu-

bly while those husbands who were still at liberty sat mutely or

stood awkwardly and stared at each other.

I do not know exactly what led my mother to decide the

time had come, but in the summer of 2007, during a routine

cardiology appointment, she asked Dr. Rogan to deactivate the

pacemaker. He said that she would need a court order declar-

ing my father incompetent, and she passed the news on to me.

When I asked her about her decision a year later, she said only,

“It was hard. I was doing for Jeff what I would have wanted him

to do for me.”

In answer to questions I posed him, Dr. Rogan would later write

me a letter describing his shock at her request. He had previously

worked as a critical-care doctor and had turned off pacemakers on

deathbeds, he said. But in his eyes, my father’s situation was dif-

ferent: he wasn’t on the brink of dying. “Your father walked in on

his own accord and answered simple questions appropriately,” he

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katy butler

wrote me. “Your mother wanted it turned off. I told her I doubted

[his heart had]any significant intrinsic rhythm and that turning

[the pacemaker] off might well result in him dying on the spot,

to which your mother said, and I will never forget, ‘Good, that is

what I want.’ He made no indication that is what
he
wanted and

he was competent at the time to my knowledge.”

This was my mother’s turning point. When my father was

vigorous and lucid, she’d regarded medicine as her wily ally in

a lifelong campaign to keep old age, sickness, and death at bay.