sense,” said the physician.
Other doctors spoke up. They finally had a glimpse of the meshes in
which they might be entangled themselves one day. One physician took
an altogether separate line, aiming it directly at the hospital administrator.
“How can you tell us to spend more time with patients to learn their
needs while also telling us to keep our office visits under ten minutes?
How can you tell anesthesiologists to take time to meet patient needs
W H E N P A T I E N T S B E C O M E C O N S U M E R S
9 3
while also telling them to start their cases on time or be penalized?” she asked.
A few in the audience murmured in approval. More debate was immi-
nent. But for the nurse and the hospital administrator things had already gone too far. The nurse was wedded to her idea of patient-centered care,
and she seemed worried that more debate would threaten her chance to
transform that idea into reality. The hospital administrator, however, was more interested in practical considerations. Hospital surveys had shown
that patients wanted patient-centered care. Several hospitals had already toyed with the idea of setting up patient-centered floors, where inpatients and doctors share completely in decision making. Patient-centered care
was going to happen whether the doctors wanted it or not.
The hospital administrator implied that all dialogue was now at an
end. “Listen, I know people fear change. That’s natural. But what you
fear now you will get used to eventually. I remember when doctors once
feared the concept of informed consent. They thought it was crazy. Of
course, it wasn’t. And doctors got used to it,” he said with feigned light-heartedness. “Just as you will get used to patient-centered care,” he added in a more threatening tone.
Bit by bit, the fantastic structure took shape in my mind. I began to see how patient-centered care differed from the old patient autonomy movement that had tripped me up twenty-five years before when caring for
Mr. D.
Mr. D had demanded certain rights as a patient. In the years to follow,
patients became even more demanding, especially when they gained ac-
cess to medical information through the Internet. The patient autonomy
movement in the United States was always especially strong. 4 Many doctors grew to resent their patients second-guessing them. Yet, as a
whole, the movement proved to be a good thing, protecting patients and
giving them a needed say in their care. Moreover, a stable equilibrium
grew up between doctors and patients over time. Patients learned more
about their treatment options and had more say in their care; when pa-
tients pushed too hard, a doctor could always say, “I can go just so far and no farther.”
But a consumer rights component always lurked within the patient
autonomy movement. It is not just as patients that people today want control over their care but also as consumers. This is the energy source behind patient-centered care. In fact, Dr. Donald Berwick, a leader in the
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C H A P T E R 5
patient-centered care movement, writes in his manifesto that patients to-
day are “consumers” who should have “choice in all matters, without
exception.” 5
Not surprisingly, the patient-centered care movement is stronger in the
United States than in any other country. America respects and values
customer service; it is an integral part of the national character. American politicians and clergymen play upon the feeling of respect for service as much as businesspeople do. Politicians call themselves “public servants,”
while the church performance itself is called a “service.” The compelling spell of patient-centered care is hard for any American to resist—even
doctors.
The patient-centered care movement does have the potential to
achieve its own stable equilibrium, just as the patient autonomy move-
ment did. Yet an unrelated trend in American medicine makes this hard to
achieve, raising the risk of catastrophe: doctors in the United States have increasingly become dependent employees.
Most doctors once worked either as self-employed professionals or in
small professional partnerships. In the last fifteen years, more doctors
have become employees of large institutions, such as hospitals or corpo-
rations. With dependent employment come bosses and the fear of being
fired, especially for not giving customers what they want.
Doctors today feel pressure from both above and below. If doctors
make their patients happy, they can keep their jobs; if not, they risk losing them. Doctors feel enough fear that some of them will adopt a risky
course to please their customers. In one example I am familiar with, a
doctor at a hospital in the southeastern United States acceded to a pa-
tient’s demand that she be allowed to hold and nuzzle her baby immedi-
ately after delivery during a cesarian section and while still on the operating table. The anesthesiologist thought it unwise, as the patient was at
high risk for postpartum hemorrhage, but she felt pressured by the hospi-
tal to give the mother what she wanted. She allowed the mother to hold
her baby after delivery. When the mother suffered a serious hemorrhage,
the baby’s presence prevented the anesthesiologist from easily accessing
the mother’s intravenous. The nurse wrested the baby from underneath
the mother’s gown, but this took time, during which the mother lost
consciousness and possibly aspirated, as her oxygen levels remained low
in the post-op area. Fortunately, she made a full recovery.
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9 5
A situation analogous to what has happened in medicine has happened
in academia. Students today see themselves as consumers, especially giv-
en the high price they pay for college. Sometimes they demand that
professors tailor their lectures to please them, even if that means learning less. Yet professors only found themselves at risk of losing their jobs
when college administrators, who technically employ them, agreed that
students were customers, since they were paying the bills, and therefore
should be given what they wanted. It was only when professors realized
they had bosses, and could be fired for failing to satisfy their customers, that they felt pressured into giving in to students.
In academia, the stakes are a student’s education. In medicine, the
stakes are a patient’s life. Sandwiched between employers above and
customers below, doctors are fast losing the ability to say, “I can go just so far and no farther.”
6
A TALE OF TWO OFFICES
A man today goes into a hospital and feels himself lost in some great city. No one takes any notice of him. If he asks for directions, busy staff bristle with irritation or ignore him altogether. He wanders along a corridor, telling himself, “When this corridor comes to an end there will be
something pretty or heartwarming, or at least different, or maybe just
space for my eye to roam,” but no—there is nothing but another corridor
like the one he has left, and whether he looks to the right or to the left, he sees corridors and rooms, all alike, over and over again, closing in on him like an army of robots. No interesting sight for his eye to rest on, no
stained glass windows, no crown moldings, no fireplaces. Nothing to
inspire him. No real space or even a
sense of imagined space. The man
feels hemmed in on all sides—and his thoughts and feelings are hemmed
in too.
The mid-twentieth-century Catholic hospital where my father worked
as a doctor had a different air. It functioned as a hospital but looked like a church. Cherubs, angels, and garlands were carved into the white stone
edifice. Wide steps at the main entrance led to a heavy wooden door with
black iron hinges, with the door itself contained inside a Gothic arch. The peaked roof over the entrance supported a large white cross. Inside the
building, the halls were dark and foreboding. Here and there, slanting
beams of sunlight passed through small windows and picked out from
among the shadows the faded pictures of Christ that hung upon the walls.
In this dim world, Catholic sisters in white habits glided about solemnly from sickroom to sickroom, in a somber yearning for divine intervention
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C H A P T E R 6
that scratched at their belief in an omnipotent God, while visitors sensed that irrational forces were at play, and that mankind was not totally in
control. A hush fell about little children as they walked around, many of whom steered close to their parents out of fear. Even drug reps entering
the building on business felt tempted to bow their heads.
As a child, I often went on rounds with my father. Whenever I entered
the hospital, leaving the hot California sun behind me, a black cloud
would suddenly weigh heavily on my brain. There was the smell of damp
air. The hall was inexplicably cold and dark. And quiet. A profound
respectful silence reigned, except for the chapel music that quailed with a painful sigh, and that made me feel melancholy. My father would take me
onto the wards to greet his patients. The rooms were full of terrifying
diseases, or so I thought. A creaking noise from a door would send
shivers down my spine, as though a monster inside had moved. On the
walls hung pictures of terrible heavenly wrath: a writhing Jesus, a fiery ball over Sodom, locusts causing famine, and the deeply furrowed face of
God.
In this world of permanent twilight I saw through my child’s eyes
what I believed to be fantastic creatures.
I saw a doctor wearing a clean, long white cape (what I later learned
was an operating room cover gown). I imagined that cape flowing back-
ward as the doctor flew through the sky. The doctor flew over peaks and
precipices, flinging thunderbolts at disease; were it not for his brave
schemes and brilliant exploits, a terrifying death, a death that frightens the imagination, would descend upon all. Dare one doubt a doctor’s powers? Why, when he approached certain doors they magically opened be-
cause he commanded them to. Sometimes they only opened halfway and
stopped, as if to taunt him, and then the doctor would stare back angrily, and they would open up completely, unable to withstand his power. (I
later learned these were electric operating room doors.)
I also saw a beautiful creature clothed in a white dress and white cap.
Tender, sweet, and kind, she was the nurse. I compared her soft hands
with the doctor’s cold, sharp instruments. I worshipped her graceful pride and light step, and the delicacy with which she mopped a patient’s brow
with cool compresses. She would lean over and pat the patient’s pillow,
and the patient would shake with pleasure, his sensitive nose smelling the clean scent around her neck, the fragrance of lemons, of fresh air, of the country. Then she would clean the patient, comb his hair, take his temper-
A T A L E O F T W O O F F I C E S
9 9
ature, and ask him how he slept and whether anything troubled him.
Sometimes her medicine hurt, and yet even if she inflicted pain by giving the patient a shot, it was a kind and helpful pain! The pain was over
quickly, and then the nurse would stroke the patient’s head and cry with
him (if he were a child), and even if the patient threw a tantrum, she
would go on being nice to him.
I saw a doctor’s wife in the distance. So regal! The queen of the realm.
And yet so busy. Family happiness and the care of the hospital were her
sole business in life. At the hospital, she would volunteer and spread good cheer. She worked in the gift shop. She baked pies for the nurses. I often picked through the cart of magazines and knick-knacks that she pushed
around the wards. Yet the doctor’s wife was more than just a street
peddler. She kept a wary eye on all that went on in the hospital and her
husband’s office. When a patient complained about the cafeteria food,
she saw that it was fixed. When the hospital needed a new machine, she
put on a pretty dress (not without pride) and charmed her friends into
giving money. On the hospital board she was always consulted. Her home
life was just as much a continuous dashing and scurrying around. She
never complained because her husband came home late at night, or be-
cause a sick patient ruined the family vacation. She cooked supper while
the children played around their father, climbed on his knees, and put
their arms around his neck. After dinner she made sure the children did
their homework so that one day the white coat would pass from father to
child, just as it had passed from grandfather to father. Later, while her husband snored away upstairs, she would pore over office receipts, click-ing the keys on the adding machine, and not until she finished would she
go upstairs and fall soundly asleep.
I glimpsed another woman behind a counter. With her white head-
dress, her diminutive size, her large twinkling eyes, and her white, almost translucent skin, she looked like a mythical fairy creature peeping out
trustingly from behind a giant oak. I wondered if she was winged, like an angel. No, she was a Catholic sister. Her whiteness and purity reminded
me of the nurse; yet she was not motherly so much as transcendent.
Shining brightly, she would come over to me, take me by the hand, and
say her holy words—a prayer so beautiful that I thought it should be
accompanied by a lute. A smile of happiness would spread across my
face, and I would think, The doctor will fix me, the nurse will love me, and the sister will bless me. As in fairy tales, I imagined her keeping evil
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C H A P T E R 6
spirits imprisoned in enchanted dungeons, her words depriving them of
any ability to harm me. When she finished her prayer she would stuff me
full of candies that were hidden inside in her habit. Then she would
withdraw gradually, as though reluctantly, like the sun drifting down
toward the horizon, only to return and bring her warmth another day.
Beloved hospital of old! Your memory, a remnant of a dream of the
historic past. It rises amid the gray monotony of the present day—dim,
misty, tinged with the sweetness that breathes from memories of the
vanished past. Vanished—yes, but not without a trace! It still lives, this past, in wards where sick patients lie worrying and search in their imaginations for something to ease the fear of what encompasses them. It lives in legend. Low I bow and kiss your tender shadows, hospital of old. I kiss your mythical inhabitants, cavalcade of honor, your chapel’s rapturous
song of the nightingale.
My grandfather was born in a small farming village in Germany in
1893. His father was a cattle dealer. Beginning in 1912, he studied medi-
/>
cine in Munich for a year, then Freiburg for another two years, and then
Frankfurt for two more years. Such hopping around was common among
medical students in those days and reflected nothing more than a desire
on my grandfather’s part to see some nice towns. He served in World
War I (on the German side) as an auxiliary field doctor before marrying
my grandmother and settling down in Frankfurt to work as an internist.
Times were hard. Germany almost starved during the first few years
after the war. My grandparents lived on horseflesh. The prescription pad
saved them, as milk was available by prescription only, so my grand-
father could get some. With extremist politics adding another layer of
uncertainty, my grandparents emigrated to Washington, D.C., in 1923.
Once there, my grandfather set up a practice on Columbia Road, within
walking distance of Garfield Memorial Hospital. 1
Life became easier. Nevertheless, my grandfather’s medical practice
failed to take off. Anti-Semitism wasn’t the problem. On the contrary,
Garfield Hospital had a long history of welcoming Jewish physicians.
The first contributions to build the hospital actually came from two small Jewish congregations, the news of President Garfield’s assassination having reached them on the Hebrew Sabbath. Nor was the problem a lack of
A T A L E O F T W O O F F I C E S
1 0 1
friends. My grandparents had busy social lives. Still, none of their friends ever became patients.
At first my grandparents took the problem in stride. On rare days when
my grandfather actually brought home money, my grandmother would
tease, “You’ve got the gewinnthosen on” (in translation, “winning pants”
or “money pants”). My grandfather would happily use the downtime in
his office to read German literature and philosophy, sitting cross-legged in a cloud of cigar smoke, his favorite pastime. Fortunately, my grandfather’s brother, a Washington department store owner, died in 1935 and
left him some money. But this only slowed the drift toward disaster.
Medical Catastrophe Page 14