Why I, a Physician, Write

“One would never undertake such a thing if one were not driven on by some
demon whom one can neither resist nor understand.”

 – George Orwell, “Why I Write”

I remember my first encounter with great literature. Before bedtime, my
father would read Great Expectations to me, using different voices
for different characters. I remember Pip and Miss Havisham, though I don’t
think I fully understood Miss Havisham’s peremptory and eery commandment
to Pip to love Stella. I remember the stygian scene with the convict in the
graveyard. I also remember reading Sherlock Holmes under my covers, enamored with his brilliance and the game that was afoot. I remember tearing through the Lord
of the Rings
books and the first few books of Robert Jordan’s The Wheel of Time
series. Great stories left a large impression on my childhood. The
thrill of diving deeply into an engrossing world still makes me a bit
giddy. Even when I read books far more socially complex now, books I would
never grasp as a young reader, like Thomas Hardy’s novels, I am reminded of the initial
excitement I once felt discovering new stories.

As a child, these stories didn’t remind me of my own life or people in my
life, they were just thrilling. I fantasized about writing my own stories
one day. I created comic books with different monsters, though my drawing
was appalling. I once sat down to hand-write my own epic fantasy story – I
don’t think I got very far. I suspect, then, that my desire to write and tell stories was present
at a young age. But I lacked the sedulousness to work on my drafts. I would write an essay for school or a story at home and
immediately hand it in or toss it aside, assuming that was the end.

Since then, of course, I have written more and learned more. The process
certainly has not gotten any easier, especially as time spent writing
crowds out time for other things in life like music, friendships, reading,
TV shows, and family. Indeed, the time invested has not been trivial. Just
as an example, I was covering the intensive care unit one night during my
first year of residency and during the few brief quiet moments of the night
I was reading a book about the psychology of the Nazi war criminals

for an essay for the Jewish Review of Books
.

Why do I attempt this seemingly crazy task? It is a question prompted by a recent fellowship
interview, when an interviewer asked me: Why do you write? And
what drives a physician (and there are many physician-writers) to write?

In 1946, George Orwell explored the reasons for his own writing in an essay entitled “Why I Write.” Orwell explains that there are four great motives for writing: egoism,
aesthetic enthusiasm, historical impulse, and political purpose. Writers,
he argues, “desire to seem clever, to be talked about, to be remembered
after death…. It is humbug to pretend that this is not a motive, and a strong
one.” Because of this, serious writers are “vain” and “self-centered.” Of
course, there is an element of solipsism in writing. No writer, physician
or otherwise, writes without anticipating some kind of audience. It does
help give our writing purpose, to know that it affects or influences
others. But such an aspiration is not unique to writers, as Orwell
concedes. All professionals – scientists, artists, politicians, etc. –
desire, to some extent, to be remembered through their research,
art, or deeds. No ambitious citizen can deny that this plays some role,
large or small, in what he or she does. But the entire writing motive is not
necessarily self-aggrandizing: Writers appreciate beauty, “pleasure in the
impact of one sound on another, in the firmness of good prose or the rhythm
of a good story.” An author, no matter what his or her topic, attends to
“aesthetic considerations.” And the content matters, too. Essayists,
novelists, political journalists all “desire to see things as they are, to
find out true facts and store them up for the use of posterity.” In other
words, they aim to portray the world as it is, to draw away the curtains.
And there is also a “political purpose” to this. Though writers do want to see things as they are, they also want to imagine the world as it might be
or “to alter other people’s idea of the kind of society that they should
strive after.” Orwell does not argue that one of these is more important
than the other: “These various impulses must war against one
another,…fluctuate from person to person and from time to time.”

Most of what Orwell says pertains to physician-writers. For some
of them, for instance, politics drives much of their work. Atul
Gawande, a surgeon and public health researcher, is a good example. Gawande’s books, like Being Mortal or The Checklist Manifesto, both agitate in some way for reform of our
medical system. In Being Mortal, he urges us as a society to rethink the way we take care of the elderly and those closest to death
such that we provide them with more independence and choice and less
invasive care. In The Checklist Manifesto, he discusses the
importance of checklists for the safety of patients in a hospital, in
particular during surgeries.

For most physician-writers, however, I suspect that the primary purpose is
to reveal to the reader what the world of medicine is like – a world that contains the kinds of riveting stories that fiction offers.

Physician-writers face unpleasant facts; or, rather, unpleasant aspects of
life. Most of the stories I relate on this blog are tragic in some way – some of this comes out of a frustrating sense of injustice, but a lot of it comes out
of a sense of the inevitability of tragedy and the beauty and rare success
coupled to that struggle. Thomas Hardy

reportedly said
, “The business of the poet and the novelist is to show the sorriness
underlying the grandest things, and the grandeur underlying the sorriest things.” The physician-writer shows the sorriness and grandeur underlying our physical life. In that sense, I write with a historical impulse, “to see things as they
are.” What is medicine really like? What does it mean to be sick and
helpless? What does it mean to be sick and poor? How do physicians react to
all of this?

Perhaps the thrill and romance from childhood stories has faded somewhat, but the hunger for nonfiction as a grounding tool has taken their place.
This blog provides, among other things, a way to impart the great
complexities of medicine and diseases, which are often only understood by
other physicians and the victims of those diseases.

I wish I could write a novel with the same flair for
storytelling and the same talent for diction and the same eloquence as
Dickens or Hardy. That I cannot is unfortunate. But stories about medicine
are powerful and the most I can offer. And I am “driven on
by some demon” to write about them; a purposeful struggle to put to the page these stories that are filled with
meaning, and that might otherwise disappear.

I will never retire this task, whether it’s through this blog or elsewhere. But as my career
advances I ought to give myself space to breathe. I start my
fellowship in neurovascular disease this summer and have an important specialty
board exam this year, both of which require, I think, all of my
intellectual energy. So things will be quiet on this blog for
now, but look for more in the coming year.

What Makes a Great Physician?

At this blog’s inception nearly five years ago, I asked myself the following question: “When you watch impressive doctors at work,
what is it that most impresses you?” In other words, what makes a great
physician? I was a third-year medical student at the time and I couldn’t
answer the question. At the beginning of training one can hardly keep up
with the incoming information, let alone consider the characteristics that
make a great physician. I liked and disliked certain doctors depending on
the way they treated residents, medical students, or patients. But beyond
kindness, their traits varied widely. During residency I have been
fortunate to work with many admirable doctors, and consequently my sample
size has grown. Seeing what I’ve seen thus far, I think
curiosity and humility are the two most impressive characteristics of a
great physician.

Wikimedia

Galen of Pergamum (AD 129–ca. 216), the Greco-Roman doctor, wrote extensively about how to
make physicians great again in his treatise That the Best Physician Is Also a Philosopher. He bemoans the lost art of medicine and the
corruption of the profession. He advocates for a temperate lifestyle,
arguing that if a physician puts virtue above wealth, he or she will be
“extremely hardworking” and will therefore have to avoid “continually eating or drinking or indulging in sex.”

A doctor must also be “a
companion of truth.” “Furthermore, he must study logical method to know how
many diseases there are, by species and by genus, and how, in each case, one
is to find out what kind of treatment is indicated.”

He continues,

So as to test from his own experience what he has
learnt from reading, he will at all costs have to make a personal
inspection of different cities: those that lie in southerly or northerly
areas, or in the land of the rising or of the setting sun. He must visit
cities that are located in valleys as well as those on heights, and cities
that use water brought in from outside as well as those that use spring
water or rainwater, or water from standing lakes or rivers.

Notice that Galen does not endorse brilliance as a required characteristic of a
physician. No, he advocates for the intelligent use of one’s faculties.
Indeed, he seems to favor curiosity about the surrounding world as a
necessary quality for a doctor.

Curiosity, a desire to discover and a desire to know, is inseparable from a
great physician. In residency we are often told by our attending physicians
that we must be “lifelong learners.” Curiosity naturally creates lifelong
learners. Medicine, after all, is not confined to what one learns in
medical school or residency. If it were, our doctors would not be very
good. One does not see every disease process in residency, one often
forgets certain things, and

the evidence

and guidelines are forever changing and improving. Thus, we must always be
looking up the latest evidence on the diseases we see.

Moreover, there isn’t always a clear diagnosis or treatment, and
physicians must scour scientific literature for the answer. When, as so
often happens, there is a diagnostic mystery, curiosity works against our
inclination towards laziness and forces us to stay on our toes, question
what we believe and why we believe it.

Curiosity also aids the clinician-researcher. Physicians since Galen’s time
have participated in various forms of research, attempting to answer
questions that have not yet been answered. For many of our predecessors
the questions were quite basic, given the general ignorance about the world
of biology. Yet there are still vast areas of medicine for which answers
are needed. The most obvious examples in the specialty of neurology concern
brain tumors or diseases like

Parkinson’s
. The lifespan for patients with certain brain tumors is a year and a half
– how does one improve treatments for these virulent neoplasms? For
Parkinson’s disease, we can only treat symptoms but cannot slow the disease
down – what treatments might reverse this pathology or at least stop it in
its tracks? Curiosity drives physician-researchers to make discoveries and
to seek answers to these questions.

But there is another characteristic, too, necessary in order to be a great
physician. The sheer volume of material one must know and understand about
medicine as well as the natural world is enormous and infinite. Because of the infinite knowledge they cannot possibly possess,
doctors must also confront this world with humility, humility about how
much one must truly know and understand in order to be great.

What was true in Galen’s life is doubly true today: There is a vast world of knowledge
in the realm of medicine. Humility, like curiosity, provides doctors with a
sense of the struggle to accumulate a vast amount of knowledge.
It helps them confront the possibility of being wrong. And
as I’ve written on this blog,

doctors are often wrong
. Humility makes us more likely to double-check ourselves, to re-examine
the patient when we’re unsure, to look things up when we feel insecure in
our diagnosis. It makes us more thorough. It urges us to listen to the
opinions of other doctors, of nurses, or even of patients.

What, then, when I watch doctors at work, most impresses me? What, then,
makes a great physician? Curiosity and humility are necessary
characteristics. There is not a single physician I look up to who does not
have both of these qualities. These alone may not be sufficient but I have
also noticed that other remarkable characteristics tend to accompany
curiosity and humility: kindness, self-discipline, intellectual rigor,
equanimity.

William Osler
Wikimedia

In his valedictory address to the University of Pennsylvania School of Medicine in 1889
(also known as the essay Aequanimitas) Dr. William Osler, one of the original four physicians at Johns Hopkins Hospital and a
legendary professor of medicine at the Hopkins medical school and later at
Oxford, discusses the quality that he thinks is most integral to being a
physician – imperturbability or equanimity. He writes:

A distressing feature in the life which you are about to enter, a feature
which will press hardly upon the finer spirits among you and ruffle their
equanimity, is the uncertainty which pertains not alone to our science and
arts but to the very hopes and fears which make us men. In seeking absolute
truth we aim at the unattainable, and must be content with finding broken
portions.

What lies behind Osler’s idea of equanimity is an acknowledgement of
uncertainty in medicine. And such an acceptance arises first from a humble
and inquisitive outlook. Curiosity and humility acknowledge this
uncertainty and the need to prepare for it, with equanimity.

Medicine as a Vocation

“Hey, doc, come over here!” the patient shouts at me and gestures with a
quick wave of his hand as I walk by his room. “I need to show you
something. Take a look at this.”

Without waiting for me to ask him what is wrong, he takes out his member
and testicles and points at them.

“One of my testicles is swollen. Look! And it’s painful, doc. There’s this
shooting pain going up into my stomach. I feel nauseous. Can you get me
something for the pain?”

I look at his testicles and feel both of them with my gloved hand. One is
certainly larger than the other and the patient winces in pain when I touch
them. Though it is close to the end of the day, perhaps ten minutes or so
before I sign out to the nighttime physician, I run through the possible
diagnoses:

testicular torsion

(the testicle twists on itself, reducing blood supply and causing intense
pain and eventual infarction of the testicle),

epididymitis

(an inflammation of a certain part of the testicle usually caused by a
sexually transmitted disease), a varicocele (the
veins of the testicles enlarge due to malfunction of valves within the
veins, causing increased pressure and pain), and other, less common
pathologies.

At this point, the best next step is to get an ultrasound of the
scrotum. This imaging study, which is fairly quick and cheap, gives the
physician a sense of the pathological process. Of course, this has to be
ordered rapidly because if the patient does have testicular torsion, he
needs to be seen immediately by a urologist.

After examining the patient, ordering the test, and calling down to the
ultrasound technician to make sure the patient had the imaging study done,
it is time for sign-out. But I am in a bit of a bind. It is my
responsibility to make sure the patient gets the treatment he needs, but I
also have plans with a couple of friends all the way across town. If I
leave now, I can make it but will surely be late. If I wait for the study,
I will never make it.

I stop by the night physician’s room and let her know that it will be a
little bit of time before I sign out because I’m going to follow up on this
study. She, understanding my conundrum, tells me to leave and kindly
volunteers to take over. Frequently, residents cover for each other in
these situations, for we know, given our hectic schedules, how hard it can be
to find time to keep up with friends, date, and attend weddings, religious
ceremonies or graduations. I jet out of the hospital and just make the
crosstown bus in order to show up twenty minutes late.

At the bar my friends and I discuss our respective days at work. And then
comes the dreaded question, directed at me: “How was your day?”

I pause as I do when people ask me this question, not because I don’t know
what to say, but because there is so much to say I really don’t know where
to begin or what is appropriate. Do I tell them how only an hour ago I was
examining another man’s penis? Do I tell them about the patient I admitted
to the hospital and watched die over the course of five days because his
metastatic cancer was so bad that there were no treatment options? How
about the time a patient walked into the hallway, pulled his pants down,
and pooped on the floor by the nurse’s station?

If I’m honest about the events of my day, I now know the look I’ll receive
in return: the eyes widen, the eyebrows go up, the mouth twists in slight
disgust and the jaw drops ever so slightly. “Why,” their shocked facial
expressions seem to say, “are you telling me this?” The problem is that
these stories and experiences not only are a part of work; they become a
regular occurrence and a part of life. Resident hours are so long and so
intense that, frequently, there isn’t much else to talk about. Anything
outside of the hospital feels unnatural to residents; we no longer fit in.
Our singular experiences mark us in a sometimes Hester Prynne-like way among our
friends and significant others outside of medicine.

Sometimes, too, we mark ourselves not outwardly but inwardly. When I am
with friends at a bar or at an apartment sipping on a beer, it will
suddenly occur to me that three hours prior, a patient was vomiting on me or
dying

as I pumped on his chest
. The juxtaposition between these two very close moments in time is
bizarre.

But even beyond these occasional strange realizations and awkward
interactions is something much more expected. When I describe to acquaintances what
neurologists do, a typical response goes something like
this: “My grandfather is losing his short-term memory — could this be
Alzheimer’s?” Or, “my grandmother has Alzheimer’s, are there new
discoveries being made on how to cure it?” Some of this is about making
conversation related to my job. However, what becomes clear is that you cannot
escape the profession. For better and for worse, it

follows the doctor everywhere
.

~

In February 2017, Dr. Farr Curlin, the Josiah C. Trent Professor of
Medical Humanities at Duke University,

wrote a wonderful essay in Big Questions Online
 about medicine, titled “What Does It Mean to Have a Calling to Medicine?”
In it, he explains his hopes that young physicians see medicine as a
vocation: “To practice medicine as a vocation is very different [from other
professions]; it means putting oneself forward not merely as a physician
but in order to become a physician.” And becoming a physician takes “a lifetime of effort.” He compares it to the theological
concept of vocation, in which one is summoned or called by God to a certain
task. His purpose, I think, is not to portray doctors as gods or medicine
as the holiest of professions, but to make clear how absolutely consuming
medicine is if taken seriously.

To practice medicine as if it were just another 9-to-5, Dr. Curlin
observes, “is akin to play-acting.” One attempts to keep the role at a
distance. This is a fool’s errand, as no serious physician can manage it. Any serious approach to the profession necessarily leads to a consuming embrace. I think even of physicians I know who
have reached the highest levels of their field, but who still respond to
patients’ emails at night after they’ve come home from work; they must be
available by phone day and night when they’re on call; they still have to
keep up with new research, which they read on their own time; and many even
do medical research outside of work hours. This is not to mention the incredible and unsettling statistic that physicians have one of the highest suicide rates of any profession, a rate more than twice that of the general population.

Anton Chekhov via Wikimedia

Dr. Siddhartha Mukherjee, a physician-writer, has considered this dilemma,
too. In a stunning essay for The New Yorker,

he writes about Anton Chekhov
, the great Russian playwright. Chekhov gave up his medical practice to
travel to Sakhalin Island, a Russian island in the North Pacific Ocean. At
the time it was a penal colony, packed with the destitute and hardened
criminals of the Russian Empire. Why would Chekhov travel here? What
purpose did this trip serve? Mukherjee argues that Chekhov used Sakhalin
“as an antidote.” Chekhov, he claims, had become desensitized to his life
as a physician, numb to human suffering as well as to the greater corrupt
political struggle in Russia. And it is here, among the detritus of society, where Chekhov discovered sensitivity. This story poses the question faced by all physicians, Mukherjee writes: “What will move me
beyond this state of anesthesia? How will I counteract the lassitude that
creeps over my soul?”

In one sense, Mukherjee’s essay serves the purpose of encouraging the discouraged,
angry, numb physicians. But in another sense it illustrates the point that
medicine is a vocation. When patients’ suffering becomes just another task to
deal with, physicians falter not just as physicians but as people. Medicine
reaches beyond its worker bees and into the hive. It claims
physicians as human beings. It claims a part of their souls.

This is not all bad or all good. But it is nearly impossible to
dissociate the personal life from the professional life as a physician.
Medicine practiced well must be a vocation.

Bigotry, Medicine, and Pittsburgh

“You’re one of them wealthy people, from that wealthy family — what are
they called? The Rothbergs?”

“You mean the Rothschilds?” I asked.

“Yeah they’re the ones. You’re related to them?”

“No, sir. My last name is Rothstein — different family but same religion.”

Most of the time I don’t hear about race or religion in medicine but often
enough I do have interactions with patients about my religion that make me
wince. In another instance I saw a patient after a large surgery. I
introduced myself and asked him how he was doing. “I’m okay,” he responded.
Then, after a pregnant pause, he looked at my ID badge, then my face, and asked, “You’re Jewish, right?”

“Yes, I am,” I responded.

“I have great respect for the Jewish people. You know Jesus was Jewish, right?”

“Yes, I did know that.”

“But you don’t believe Jesus was the Messiah, right? You know, Jesus is our
Lord and Savior and he performed incredible miracles while he was alive.
Did you know that?”

“Yes, I’ve read some of the New Testament and I’ve spoken with Christians
about their beliefs.”

“Well, then, why not believe in Jesus? He built on Judaism. His thinking
revolutionized religion. It is the latest prophecy, the latest and truest
Word of God. Would you be interested in seeking out Jesus?”

“I appreciate the offer but I’m comfortable with my own religion.”

“Well, you should convert. It’s the only way to seek the real Truth. Jesus
is the Messiah and if you don’t convert you won’t be going to heaven.”

“Thanks, but I’m okay. Now, how’s your surgical site doing? Are you still in
any pain?”

Sometimes it even goes beyond this. There was a patient I saw regularly in
the hospital who would intermittently get aggressive, annoyed, or
anxious. The nurses called me to talk him down. One evening he was
particularly upset about being in the hospital. I entered his room as the
nurse was leaving. “Tell that n***er to leave me alone!” he shouted.

“Excuse me, that is inappropriate. We do not use that kind of language.”

He looked at my name badge and shouted, “Well guess what? I’m Hitler, so I
think you should leave.”

This is not to mention a co-resident who was told by a patient,
“You’re such a Jew.” Or another patient who told a Jewish co-resident,
“All you want from me is a pound of flesh” — a reference to The Merchant of Venice, where Shylock, a Jew, lends money to a Christian and demands a pound of his flesh as security.

These experiences and others I’ve had run the range from threats of
violence to humorous to uncomfortable, but there is a theme behind them.
Unfortunately, my experiences are not unique. All physicians take care of
racist or bigoted patients. In January 2018, the Wall Street Journal
published a piece

on racist patients, quoting doctors discussing their experiences. In a 2017 blog post by the
American Academy of Family Physicians, multiple physicians retold their stories of interacting with bigoted
patients. Dr. Lachelle Dawn Weeks, a resident at Brigham and Women’s
Hospital in Boston, wrote a

short 2017 essay for STAT News
 chronicling her experience with racism. She concludes that

in an ideal
world, hospitals would categorically disavow cultural and religious
discrimination. Hospital administrators would publicly refuse to cater
to culturally biased demands and express a lack of tolerance for derogatory
comments towards physicians and staff as a part of patient non-discrimination policies.

Dr. Dorothy Novick, a pediatrician,

wrote in a 2017 Washington Post op-ed
 that “When I treat racist patients but fail to adequately address the effect of
their words and actions on my colleagues, I not only avoid teachable
moments; I condone hate.” Dr. Farah Khan

wrote in 2015 in The Daily Beast
, denouncing bigotry she’s faced in the hospital. She asserts, “We should be
taking strides within the medical community to break down unfair judgments
and racist ideals.” Moreover, “Of all the things that I had imagined brown
could do for me, I never really expected it to make me feel out of place
both inside and outside of the hospital.”

These interactions do make a physician’s job difficult. Patients refuse
treatment from a particular physician or verbally abuse him or her on the basis of race or religion. A physician cannot offer
an argument against this to assuage the patient. And it is
difficult to hear or experience these insults and epithets after
years of training to help others.

What, then, ought to be done? Many of the physicians I cited above offer
condemnation and resolve not to tolerate racist behavior. But in
practicality these are non-specific, anodyne proposals. Of course hospitals, and we, should condemn such behaviors. But what does that mean in terms of our conduct in the hospital?

In an earlier post, I’ve written about the more general difficulties physicians regularly experience because of frustrated patients, who may swear at, insult, or even slap us, and since writing those words I’ve been punched or swung at by
patients multiple times. I’ve been accused of not caring about my patients,
of being a bad physician. This is part of the difficulty of the profession.
Physicians and nurses bear the brunt of patients’ frustrations or hatred. And while we
can tell patients that their language is inappropriate, part of being a
physician is offering our services when they are ill, despite
how we might feel about them or they might feel about
us.

This is nowhere more true than during war. As I’ve previously written about the role of the Hippocratic Oath in wartime, “The physician … is responsible only for the good
of the patient no matter what uniform that patient may wear. The Oath makes
no exception for wartime or for the treatment of an enemy.”

Tree of Life synagogue in Pittsburgh / CTO HENRY (Creative Commons)

One of the most recent and heartening examples of such principled medical
practice was after the attack in Pittsburgh this past week, where an anti-Semitic gunman killed 11 Jews in a synagogue, screaming

“All Jews must die.” After being injured in a gunfight with police
officers, the gunman arrived at a hospital

where Jewish doctors and nurses took care of him
.

Yes, there are bigots and racists who not only insult those who are
different but murder them. However, in the face of such hatred we must
continue to offer the patient treatment. To treat patients in their time of
acute need despite what they’ve done or said is part of our professional
responsibility.

This may strike some as a deeply unsatisfying conclusion. Where is
justice? Where is the punishment for these people? Why shouldn’t they face
consequences for their hatred? But we see these
patients for a brief moment in their lives. Distributing punishment is not
our purpose, nor will a refusal to treat them change the way they feel or
act. In fact, a physician is far more likely to change such behavior and to
make an impact by treating the patient. After that, we trust our legal
system to distribute punishment, and hope the prejudiced patients figure the
rest out themselves.

Is More Medical Testing Better?

“I think this patient needs a CT scan of her chest,” the consulting
physician said to me over the phone. “Her lungs sound bad, and given her
history, we need to make sure she isn’t developing pneumonia.”

The patient, though only thirty-five, had been through a lot during her
hospitalization. She came in a week prior with some shortness of breath, an
abnormally high heart rate (tachycardia) and chest pain. But her heart
checked out just fine. An EKG was normal and her troponin, a protein
that spills into the blood with damage to heart, was undetectable. Because
of her tachycardia and chest pain we tested her for a

pulmonary embolus
, or clot in the lungs, with a CT scan. It was positive. The potentially
deadly clot blocks off blood flow coming from the right side of the heart
into the lungs causing heart strain and disrupting oxygenation of blood and
the functioning of the heart.

We admitted the patient to the

intensive care unit

where she received IV medication to thin her blood. She recovered but
continued to experience residual chest pain that would clear in the months
ahead. As we prepared to discharge the patient, the consulting physician, a
cardiologist, told us he wanted her to get another CT scan of her chest.
She had not had a scan since the initial stages of her workup. What if she
developed pneumonia in the interim? Her white blood cell count, often a
crude marker of infection, was not elevated. She did not have fevers. When
asked, she felt well enough to go home and wanted to leave. Then again,
being in the hospital made her susceptible to infection. Moreover, on her
physical exam, we heard crackles in her lungs –
this sometimes indicates an intrapulmonary pathology. The cardiologist’s
concern gave us pause and we ordered the imaging study.

~

Doctors often feel uncomfortable with areas outside of our expertise. Consequently, we call other specialists to see the patient and give us advice. Moreover,
patients sometimes ask to see a specialist in the hospital: “Can you call
the neurologist to come see me?” or “We’d like you to call a cardiologist
to see our father while he’s here.” Because consultants share a different
knowledge base than the team primarily caring for the patient they may ask
for more tests to rule out other serious pathologies that the primary team
neglected to consider.

The patient’s repeat CT scan merely demonstrated small collapsed alveoli.
These terminal branches of the lungs often collapse when we draw shallow
breaths or lie flat for a long time, a typical finding in many hospitalized
patients. Given the benign nature of this finding, we discharged the
patient. Yet she had received an extraneous dose of radiation and her
hospital bill would be hundreds of dollars more. Did she absolutely need
this? This common story raises other questions, too. Do patients do better
with more specialists seeing them? Do patients do better with more testing?

In a 2012 post for the New York Times Well blog, Tara Parker-Pope

pointed out

that “overtreatment – too many scans, too many blood tests, too many
procedures – is costing the nation’s healthcare system at least $210
billion a year, according to the Institute of Medicine.” And the stories
she tells about astronomical hospital bills due to overtesting are
disturbing.

In
a 2015 article in the Journal of the American Medical Association, a group of researchers found mortality for high-risk
heart failure and cardiac arrest among patients was lower in teaching hospitals
during national cardiology meetings compared to the rest of the year – meaning that the absence of a large number of cardiologists, who were attending meetings, was correlated with lower mortality for these heart conditions in the hospital. In an editorial in the same issue, Dr.
Rita Redberg makes a disquieting suggestion: “How should we interpret these findings? One possibility is that more interventions in high-risk patients with heart failure and cardiac arrest leads to higher mortality.” Is there too much being done, especially by experienced
physicians?

Dr. Ezekiel Emanuel, an oncologist and bioethicist, elaborated on these questions in a New York Times op-ed in 2015:

We – both physicians and patients – usually think more treatment means
better treatment. We often forget that every test and treatment can go
wrong, produce side effects or lead to additional interventions that
themselves can go wrong. We have learned this lesson with treatments like
antibiotics for simple medical problems from sore throats to ear
infections. Despite often repeating the mantra “First, do no harm,” doctors
have difficulty with doing less – even nothing. We find it hard to refrain
from trying another drug, blood test, imaging study or surgery.

When specialists like neurologists or cardiologists see a patient, they
approach the bedside from a unique perspective. The pathologies they know
and think about are very different from what family medicine or internal medicine doctors thinks of when they see a patient. Specialists, who often act as consultants, consider the diseases they are most worried about within their field. They’ve been asked to see the patient to
recommend workup for a disease potentially related to
their area of expertise. Their view, in other words, is necessarily myopic – if you give a carpenter a hammer, surely the carpenter will find a nail.
This does not always happen, but by nature there is a bias when a consultant
approaches a patient – and that bias is toward ordering another test,
toward doing something. Part of the art of medicine, especially as a specialist or consultant, is figuring out when the patient needs
something and when the best approach is to do nothing at all. Our patient
at the beginning of the story did not really need a repeat CT scan. To be
sure, the cardiologist didn’t recommend it simply to radiate the patient or
increase the hospital bill. But none of us wanted to miss something.

A conservative method of practice can come with experience, but as evident
from the JAMA study referenced above, that’s not necessarily the
whole story. Some of this, I think, requires thinking regularly about how well the
patient in front of the doctor is doing and how a test will change the
course of the patient’s treatment. “Will this change our management?” is a
question our attending physicians always ask us before we order a test. And it is a
question all doctors must ask themselves.

Reflections on Treating the Poor

It is altogether curious your first contact with poverty. You have thought
so much about poverty — it is the thing you have feared all your life, the
thing you knew would happen sooner or later; and it is all so utterly and
prosaically different. You thought it would be quite simple; it is
extraordinarily complicated. You thought it would be terrible; it is merely
squalid and boring. It is the peculiar lowness of poverty that you
discover first; the shifts that it puts you to, the complicated meanness,
the crust-wiping.

– George Orwell, Down and Out in Paris and London


George Orwell’s 1933 memoir, Down and Out in Paris and London,
relates the clear-eyed experience of being homeless and penniless. The
novel’s protagonist lives in Paris giving English lessons and eventually
experiences a stroke of bad fortune and loses his job; money slowly but
surely disappears. He is overcome with “a feeling of relief, almost of
pleasure, at knowing yourself at last genuinely down and out.”

Imagine, Orwell asks of us, what this bad fortune means. You cannot send
letters because stamps are too expensive. At the baker, an ordered pound of
bread weighs in slightly more and thus costs slightly more — and you cannot
pay for it. You avoid “a prosperous friend” on the street so he
won’t see that you’re “hard up.” And you’re hungry. Wherever you walk there
are inescapable reminders of this: bakeries, restaurants, coffee shops.
“Hunger,” Orwell writes, “reduces one to an utterly spineless, brainless
condition, more like the after-effects of influenza than anything else.” Months pass by in between baths. Clothing is pawned. In the midst
of this scramble to live, however, one forgets that there is, indeed, a lot
of time with nothing to do at all: “you discover the boredom which is
inseparable from poverty; the times when you have nothing to do and, being
underfed, can interest yourself in nothing.”

Orwell based such descriptions largely on personal experiences. In 1927 he
spent time in the company of tramps and beggars in London, dressed in
worn-out clothing and sleeping in poor lodging-houses for two or three
days. He subsequently moved to Paris and subjected
himself to similar experiences. In doing so, he eventually brought
attention to the plight of the poor, providing an honest, unvarnished look
at what it was like to be down and out.

~

Rereading the book reminds me of Bellevue Hospital, New York City’s
flagship public hospital. Bellevue, or its progenitor, was originally an
infirmary in Manhattan in the 1660s and became the most well-known of the
public hospitals in the country (I have

written about it
 for Public Discourse). Here physicians treat the uninsured, the
undocumented, and the homeless. It is a rare day when a physician at
Bellevue does not interact with New York’s poorest residents.

Jim Henderson (Creative Commons)

Sometimes they come in search of medical care and sometimes they come in
search of a meal. They stumble in from homeless shelters or from street
corners, inebriated, withdrawing from drugs or alcohol, psychotic,
suicidal, deathly ill or sober. Occasionally they unknowingly enter the
emergency room with lice or bedbugs and nurses delouse them with multiple
layers of permethrin, an insecticide. The physician must approach these infested patients with
a hairnet, gown, and gloves — the lice crawl on the patient’s head, chest,
arms and bed sheets. The smell sometimes overwhelms the doctor or nurse,
too. It may have been months since the patient has bathed, and the odor
percolates throughout the room and the hallway.

As I wrote in my Public Discourse piece, the patient presentations
are frightening and remarkable:

Ride the elevator down, and you will stare in horror as an agitated drug
addict with an infection tries to punch a physician while bolting out of
his hospital room with security guards and nurses in pursuit. Next door, a
homeless patient lies in bed with heart failure. Next to him is a patient
who’s visiting New York from Africa with a raging AIDS infection. Peer into
another room down the hall, and you can watch patients withdrawing from
alcohol or heroin, thrashing about and screaming.

Physicians have the unique privilege at Bellevue to see poverty up close,
which so rarely occurs in upper and middle class professions. But as close
as we are, we don’t really understand the poor the way Orwell did. We don’t
live amongst them or feel the curse of extended hunger or the uncertainty
of when the next meal will come. We don’t experience that odd sensation of
boredom, where there is nothing to do because one has nothing to do it
with. And we cannot fully empathize with their fragile health.

~

This is why Orwell’s book is so enlightening. At least we get a description
of what some of Bellevue’s patients may go through; at least we get a
glimpse. It creates a little less space between the comfortable and the
impoverished.

But Orwell wasn’t wholly right about the poor. He wrote in Down and Out:

The mass of the rich and the poor are differentiated by their incomes and
nothing else, and the average millionaire is only the average dishwasher
dressed in a new suit. Change places, and handy dandy, which is the
justice, which is the thief? Everyone who has mixed on equal terms with the
poor knows this quite well. But the trouble is that intelligent, cultivated
people, the very people who might be expected to have liberal opinions,
never do mix with the poor.

True, there is a closeness between “intelligent, cultivated people” and the
“poor” simply by virtue of being human. However, there are deep differences
that would not disappear if the two simply switched jobs and clothing. For
instance, in 2016,
four percent of U.S. adults experienced a “serious mental illness.” This did not cover patients without
fixed addresses — the homeless. And     
approximately one fifth of the homeless in the United States
 suffer from a severe mental illness. Even if the definitions of “severe”
and “serious” don’t match up precisely, the difference between mental
illness among the homeless and other US adults is huge. And these
differences matter both to policy analysts and to physicians.

Two epidemiologists, Elizabeth Bradley and Lauren Taylor, have written a
thoughtful book dealing with the issue of rising health care costs entitled The American Health Care Paradox. In it they argue that our
skyrocketing health care expenditures (we spend

more than double the share of GDP
 of other developed countries on health care) and poor outcomes (we are in the high 20s or low 30s in rankings among OECD developed countries for maternal mortality, life expectancy, low birth weight, and
infant mortality) are not due to
overspending, but rather to underspending by the United States on social services — affordable housing,
education, access to healthy food, and so forth.

Bradley and Taylor
explain how this happens:

Several studies have demonstrated the health toll of living on the
streets; more than two-thirds of America’s homeless population suffer from
mental illness or substance dependency, while nearly half have at least one
additional chronic condition such as diabetes or hypertension. The high
costs of health care provided to people who are homeless have been well
documented. For instance, in one five-year period, 119 people who were
chronically homeless and tracked by the Boston Health Care for the Homeless
Program incurred a total of 18,834 emergency room visits estimated to cost
$12.7 million.

This makes sense. Many of our homeless patients deal with chronic diseases
like diabetes, mental illness, or congestive heart failure. We stabilize
them in the hospital and send them back to a shelter or the street. Often
they return the next week with exacerbation of their heart failure or
sky-high blood sugars or psychosis, even when medication is provided by the
hospital without charging the patient.

Thus a chasm separates our world and that of the poor, yet they are
entangled. How can you get someone to start eating vegetables and fruits
and whole grains in order to mitigate the effects of diabetes if they don’t
have money to buy these foods? How can you control a child’s asthma if a
family does not have money to clean their apartment and rid it of the
vermin, bugs, and dirt that pervade the nooks and crannies? How can you ensure a psychotic patient takes his medication when he can barely feed himself? The homeless
face a very different and more intimidating set of difficulties than the
wealthy. And these translate into challenges for physicians, who do
not have the time or skill to be both doctors and social workers.

We, as physicians, care for the patients until they are ready to leave the
hospital. Then they face their poverty on the street. Our view is but a
brief and skewed snapshot. In our myopic hospital world, the hospital
stretcher is detached from daily life. And this is necessarily so, to
a certain degree. Physicians can only do so much to fix societal ills — they cannot create a job, a safe home environment, or a loving family for
the patient.

Nevertheless, both wealthy patients and poor patients succumb to cancer,
strokes, and heart attacks. Both undergo the

humiliating process of death and dying
. In this sense, death and disease are often great equalizers. Neither the
poor nor the rich can escape them. They rapidly close the chasm between the
two classes. And at least in that vein, Orwell was right.

Locked In: What It’s Like to Be Fully Paralyzed

On Friday, December 8th, 1995, Jean-Dominique Bauby, the
43-year-old French editor of the fashion magazine Elle,
suffered a major stroke. He was behind the wheel of his BMW after picking up his son, and suddenly felt as though he were “functioning
in slow motion.” His vision blurred and he broke out in a cold
sweat. He barely managed to get
himself and his son to the home of his sister-in-law, a nurse, who promptly
took him to the hospital. At this point, Bauby could not speak or move his
body. He slipped into a coma and woke up twenty days later to find
that he was completely paralyzed except for his left eyelid. He could hear,
see, and feel but could not move or speak — a condition known as locked-in syndrome.

Bauby’s once vigorous and ambitious life was reduced to a hospital bed in a
rehabilitation facility at Berck-sur-Mer in northern
France. Despite this fate, Bauby managed to “write” a book using eye blinking,

The Diving Bell and the Butterfly (1997; adapted for the screen in 2007). His assistant slowly listed the letters of the alphabet
and Bauby blinked his left eye to indicate the letter of choice. And so he wrote the
book, letter by letter. Two days after its publication, Bauby died of
pneumonia.

The French editor experienced a rare stroke in a relatively small area of the
brain. In most cases a
stroke, or death of brain tissue, is due to the blockage of an artery (ischemic
stroke), but strokes can also be due to bleeding (hemorrhagic stroke). In
Bauby’s case, a clot likely wedged itself into the basilar artery, a vessel
supplying blood to the cerebellum and brainstem. This
caused an ischemic stroke in an area of the brainstem called the pons. Because the brainstem connects the spinal cord to the brain, all of the
motor fibers from the body converge here as they move up into the cortex.
Given the relatively small size of the brainstem, it is unfortunately
possible to knock out nearly all of these motor tracts, leading to Bauby’s
clinical presentation.

I thought about the book and its author after encountering a patient
experiencing a similar tragedy. Like the French editor, she was relatively young. She
was a writer, too. She had collapsed in a supermarket and opened her eyes
to the cold and dark reality of complete paralysis, relying on a ventilator
to help her breathe. I saw her every morning for two weeks. I listened to
her heart and lungs or drew her blood. When she opened her right eye on a
regular basis, we asked our speech pathologists to help her communicate.
They trained the patient to look up for “yes” and down for “no.”

There were days when the patient was too exhausted to participate in these
exercises or when she had an infection, or seemed to decline and failed to
answer or understand basic questions asked of her. Her mother sat at bedside each day conversing with her and encouraging her. In these
situations we typically speak with family members about the goals of care for their
loved ones. What would the patient say if she could speak? Would she want
us to do everything we could to keep her alive, such as cutting a hole in
the throat, a
tracheostomy, so she could breathe without a breathing tube? Or would she want us to
withhold surgeries? These are always difficult discussions for doctors and
family members as we all attempt not only to predict what the patient
would want but also to separate ourselves from what we want. The mother,
however, did not hesitate — she asked us to do everything to keep her
daughter alive.

What, indeed, would the patient say if we asked her? And what was she
experiencing at that very moment? Fortunately, Bauby left behind a view
into the world of locked-in patients. They are very much aware of
the world around them even if they cannot demonstrate it. Some of this
occurs within the imagination, as Bauby writes: “You can visit the woman
you love, slide down beside her and stroke her still-sleeping face. You can
build castles in Spain, steal the Golden Fleece, discover Atlantis, realize
your childhood dreams and adult ambitions.” These fantasies can bring
relief to patients:

For pleasure, I have to turn to the vivid memory of
tastes and smells, an inexhaustible reservoir of sensations…. Now I cultivate
the art of simmering memories. You can sit down to a meal at any hours,
with no fuss or ceremony. If it’s a restaurant, no need to call
ahead…. Depending on my mood, I treat myself to a dozen snails, a plate of
Alsatian sausage with sauerkraut … or else I savor a simple soft-boiled egg
with fingers of toast and lightly salted butter. What a banquet!

But rumination can turn to tragic thoughts as well. Bauby thinks of
his ninety-two year old father who can no longer descend the staircase of
the apartment building. Bauby used to shave his father; now someone needs to shave Bauby. He watches his children play and feels them embrace him without
being able to respond.

Such helplessness leaves one vulnerable to the outside world, too. An
ophthalmologist examines Bauby without his consent — Bauby cannot tell
this physician to stop. He is aroused by the terrifying sight of a doctor
standing over him while sewing up his non-functional eye. After all, when a
patient lies in bed without speaking, it can be tempting to
see him or her as a specimen rather than as a human.

What is most disturbing, though, is the way life seems to march
on without Bauby. He writes,

I am fading away. Slowly but surely. Like the sailor who watches the home
shore gradually disappear, I watch my past recede. My old life still burns
within me, but more and more of it is reduced to the ashes of memory.

When doctors bring him to Paris for more specialized examinations, Bauby
notices the building where he used to work and people he used to know, all
engrossed in the day-to-day business of life, while he is seemingly frozen
in time: “The treetops foaming like surf against glass building fronts,
wisps of cloud in the sky. Nothing was missing, except me. I was
elsewhere.”

Jean-Dominique Bauby’s book is tremendous and beautiful not simply because
his story and words are so affecting. It gives voice to the patients we are
often tempted to brush off — there is a person within the heavy immobile
flesh. And if there is a book inside the mind of one, of course there are
books inside the minds of others. (However, as I’ve pointed out elsewhere,

great accomplishments are unnecessary to demonstrate the value
of a human life
.)

Thankfully,
locked-in syndrome is not a death sentence; nor is it necessarily a fate
worse than death. Patients can recover after such a devastating injury. The Guardian

published a story in 2012
 about a patient who regained most of his motor function after being
locked in. A
1995 study of 11 patients with locked-in syndrome found
that all of the patients regained enough control of fingers or toes to use a digital switch.
In a 2003 study, authors
concluded that five- and ten-year survival rates for patients with stable
locked-in syndrome were 83% and 83% respectively (that number
dropped to 40% at twenty years). Of the patients in the study, only one wanted to die, but seven of them never even considered euthanasia, while six did but rejected it.

To become locked-in is not the end. This should give us pause about withholding aggressive treatment
from these patients. They are still very much with us, and with luck and
modern medicine perhaps we can bring parts of their bodies back.

When Doctors Are Wrong

As medical students and resident physicians gain experience they also gain
knowledge and confidence. Consequently, young trainees eventually reach a
level of comfort in speaking with families and patients about prognosis and
disease course. This is part of the purpose of training, as these
conversations happen so often that they are an integral part of practicing
medicine. But it isn’t certain that with experience and confidence also comes
accuracy.

***

Soon after finishing sign-out on a night shift I received a page. The
nurses told me that a patient’s daughter had arrived and wanted to speak
with me about her father. The patient was an elderly but relatively healthy
gentleman who had been admitted with abdominal pain. Multiple imaging
studies had shown little to account for his discomfort. But the pain was so
intense that he could not eat anything. Even going to the bathroom was
difficult — he held in his stool to avoid the agonizing act of defecating.
As a result, he became constipated, which then exacerbated the pain. Thus,
the medical team administered anti-inflammatory treatments, stool softeners, and IV
fluids as they searched for the etiology of this troublesome symptom.

The patient’s daughter asked me about the latest imaging studies and labs
as she sat holding her father’s hand. Buried to his chin under the covers,
the patient participated in the discussion, asking when he would be able to
eat and go to the bathroom easily again. I explained that all the tests had
been negative so far and we were unsure of what was going on. I then left the
room, and the daughter caught up to me in the hallway. She seemed worried,
speaking hurriedly and pleadingly: “How long do you think my father has
left to live? How much time do I have left with him? Should I start making
funeral arrangements?”

The questions took me aback. I had seen plenty of patients in the
intensive care unit
who were on the verge of death and they looked so different from her father
— a profound pallor, somnolence, lethargy, disinterest in conversation
and food. But this patient wanted to eat again, he wanted to see his
family, he wanted to watch basketball on TV, and he was interactive and
conversational. His cheeks certainly did not exhibit the deathly pale hue
of those crossing over to the other side. I assured the daughter of this:
“I don’t think you have to worry about that. The most important thing right
now is that we figure out what is going on. I can’t tell you how long he’s
going to live but I would be shocked if he had only days or weeks left.”

This interaction repeated itself for the next three nights, always with the
same diagnostic uncertainty. On further imaging there was evidence of some
abnormal fluid in the abdominal cavity. Interventional radiologists
extracted the fluid to test it for any cancerous or infectious cells, but it
would take perhaps a week or more for definitive results to come back. In
the meantime, the patient’s pain improved and he moved his bowels without
issue. Even though we didn’t yet have a diagnosis he seemed to be doing
incrementally better each day.

On the fourth night I again saw the daughter and she asked: “You don’t
think I should be planning the funeral for my father, do you? He’s not
going to pass in the next few days?” I understood why she was asking the
question — any child ought to be concerned for the well-being of a parent.
But I was also surprised because her father was on the mend. I told her
that if he continued to improve he would leave the hospital, and his primary
care doctor would follow up the lab results and see him in clinic.

At around 2 a.m. that same night, a voice over the hospital loudspeaker
echoed throughout the halls as I jumped out of my chair: “Code blue, 7th floor, code blue, 7th floor.” There was a
patient in cardiac arrest. I ran out of the workroom and met up with
another resident. Which patient was dying? On my way to the code I ran
through the patients on the coverage list that evening; I did not expect
anyone to pass away. As the other resident and I ran down the hall I saw
the code cart containing all the medical resuscitation equipment necessary
to treat cardiac arrest outside of the room I had visited every night for
the past four nights. My heart leapt out of my chest; I pleaded with some
higher power that it not be that patient. But it was.

The resident, nurses, and I immediately began CPR. The anesthesiologists
burst into the room and stuck a tube down the patient’s throat and into his
trachea to protect his airway as the respiratory therapist attached the
tube to a ventilator to help the patient breathe on his own. After multiple
rounds of CPR, his pulse returned. We wheeled the patient — attached to
tubes, and poles filled with intravenous fluids — to the ICU for closer
monitoring. He didn’t respond to our questions or poking and prodding, but
he was alive.

Alas, as soon as we got to the ICU, his heart once again
stopped beating and his IV line ceased working — his veins (which can
happen as we age) were friable and brittle, and the small vein carrying the
volume and force of the IV infusions burst. Without an IV we could not give
medications. We turned, then, to an

intraosseous (IO) line
. This entails drilling a hole into the bone and infusing medications
through that hole. It is a proven method of administering medications when
physicians and nurses cannot obtain IV access. I opened the IO kit and
attached the drill to the IO needle, placing it on the shinbone and drilling. It
slid into the bone, I detached the drill, and hooked up the
IV tubing to the IO line jutting out of the patient’s bone. At this point,
the code had been going on for nearly 15 minutes and the patient’s family
had arrived. They watched as we furiously attempted to revive their loved
one. At some point a family member shouted “Stop, please, enough!” Time of
death: 2:45 a.m.

I sheepishly held my head down, avoiding eye contact with the family as
they sobbed. The medical team and nurses quietly left the room, leaving the
patient in peace. As I passed by the daughter, I could only say “I’m so
sorry” — little else would have sufficed. Not only did we not save him, but
night in and night out I had given the daughter a false impression that he
wouldn’t die. Perhaps, I wondered, I had been disingenuous in some way.
Either way, I was wrong.

 ***

Alas, physicians are wrong relatively often, and there is ample
evidence for this. In a systematic review in the

British Medical Journal in 2012
, researchers found that each year up to 40,500 adult patients in American ICUs die with a misdiagnosis. The Journal of the American Medical Association published an analysis in 2009, concluding, among other things, that “while the exact prevalence of
diagnostic error remains unknown, data from autopsy series spanning several
decades conservatively and consistently reveal error rates of 10% to 15%.”
The American Journal of Medicine published a

separate analytic review article in 2008
, concluding that diagnostic error occurs up to 15% of the time in most areas
of medicine. The authors further theorized that overconfidence often
accounts for at least some of the errors. These reports have reached a wide
audience in the laymen’s press as well. In 2015, the Washington Post published an article indicating that diagnostic errors affect 12 million adults each year. The
impacts of errors, as we see in the story above, don’t just involve the patient
but the patient’s families, too.

Though these statistics are shocking, it is almost impossible, from the
patient perspective, to look at them and subsequently be skeptical of everything a doctor says. After all, we are not only practically but also emotionally dependent on them: We want reassurance from our
physicians and we want definitive answers. As a patient, it is frustrating
to hear “It may or may not be cancer and we can’t be sure” or “I don’t know
how much longer she has left.” Indeed, when the path ahead of us is no
longer clear, we turn to physicians for answers because of their
experience. We want them to be the kinds of people none of us can
be — always right, always knowledgeable, always calm and composed. But they
are fallible, despite the impossibly difficult and long road they’ve
traversed.

And what can we as physicians take away from this? Doctors want to be
the kinds of people their patients expect them to be. But the statistics
of medical errors are the reminders of how impossible that is; how many years of studying and
experience are necessary even in order to be competent; how difficult,
despite the many exams we take and pass, it is to apply knowledge
appropriately. Not only are we fallible, but the science we rely on is not
always helpful either. Indeed, the best studies are useful merely for inferring what will
probably happen — they do not tell us definitively what will happen to the
patient in front of us. Moreover,

scientific evidence does not exist
for every treatment in every situation or every diagnosis in every
situation. Once again in medicine,

our ideal does not match with the real
, and our preconceived notions are sometimes shattered in moments of frustration
and uncertainty. Perfection is unattainable, but we must
constantly seek it out, always aware of how out-of-reach it lies.

When patients and their families now ask me questions about prognosis or
treatment I always preface what I say with: “Nothing is 100% in medicine.”
Though I will be wrong again in my career and will, hopefully, learn from
my mistakes, I never want to give a false impression. We often tend to ignore uncertainty or wish it away, but we must always remind
ourselves, whether as patients or doctors, that no doctor and no science is perfect.

A Biopsy

There are certain patients who never fade from a doctor’s memory — they make
an indelible imprint on one’s training. Thinking back on these patients and their respective hospitalizations is
like gazing through a pristine window pane on a clear, sunny day. Often they
stick in our memories because one becomes emotionally invested in
them or because there is some interesting disease or singular clinical
outcome. The former patients usually affect us more deeply.

***
Blood cells from a patient with Leukemia
(Prof. Erhabor Osaro via Wikimedia – CC)

I can tell you her name, age, and favorite foods to eat and cook. I recall,
without difficulty, how many children she had, her religion, where she grew
up, traveled and met her husband. I can even recreate her hospital room in
my mind — family pictures across from her bed, a knitting kit on her
nightstand next to her laptop computer, a plastic storage bin with clothing
and candy.

She was in her fifties and had been diagnosed with

leukemia
, a cancer of the blood. There are different types of leukemia, but in
general, patients with leukemia have bone marrow that overproduces certain
infection-fighting cells, or

white blood cells
. Some of these cells function normally, but many do not. They overcrowd the
marrow, preventing it from making red blood cells and platelets. If there is a high enough number of them, they clog up blood vessels. And
eventually, the cancer kills you.

Treatment of leukemia involves rounds of chemotherapy,
potent drugs that arrest cell growth or division by acting on a specific
stage in a cell’s reproductive cycle. Each of these drugs
targets different aspects of quickly dividing cancer cells. But they also
wreak havoc on the body’s normal cells, causing nausea and vomiting, hair loss,
heart damage, kidney damage, and liver damage. Unavoidably, the therapies for
leukemia have serious, sometimes intolerable side effects.

The goal of prescribing such potent medications is to wipe out all of the
cancer cells. But it is especially important to wipe out the “stem cancer
cell” — that is, the original cell or group of cells causing this tempest. If
you can’t kill those cells, you cannot cure the cancer; they divide and produce more defective, parasitic, and deadly neoplasms. For
certain patients a

bone marrow transplant
 is the best hope for a cure. Chemotherapy wipes out one’s own bone marrow
and cancer cells to make room for the transplant, which does not contain
the same cancer progenitors. The donor’s marrow must match the patient’s
marrow; the cells produced from the transplant must be sufficiently genetically similar to the patient’s or the white blood cells from the donor tissue will attack the patient’s own body.

Our patient had gone through multiple rounds of chemotherapy, all of which
failed. She had found a match for a bone marrow transplant, though, and was
going to try a new combination of chemotherapeutic drugs to wipe out her
bone marrow in preparation for the procedure. This process takes weeks. Thus, she lived
in the hospital, receiving family along with friends from church.
During the afternoons, after rounds, I would come by and chat with her if
she wasn’t too exhausted or sick. Our conversations wandered from religion to food, travel, and family. We talked about history, too. She was a Civil War buff
and had no trouble discussing her favorite historical figures from that era
and her favorite speeches.

She possessed a seemingly infinite amount of patience and kindness given the
circumstances. I never once heard her bemoan her situation. She wanted, I think, to be treated as she had always been
treated, even as the reality of her prognosis set in. If she hadn’t had children, she once mused to me, she would have given up after the last round of chemotherapy failed and opted for palliative care. But her
children were too young to lose their mother, and so she hoped to live on.
So we hoped with her, attempting just once more to extend her life.

At a certain point towards the end of the chemotherapy regimen, we extract
bone marrow from the patient and look at the marrow under the microscope
with a pathologist. A
hematologist aspirates the sample using a large needle and spreads it onto
an approximately three-inch-by-one-inch slide. The oncologist, pathologist,
residents, and students look at the small sample of tissue. Ideally, there are very few cells and almost no cancer cells.
Otherwise, the chemotherapy has failed and the transplant cannot be done.
As the pathologist moved the slide of our patient’s marrow around, large dysmorphic cells popped into view. There weren’t a lot of them, but they
were noticeable and they were cancerous. I heard the pathologist offer up a
disappointing, “Hmmm.” No, as it turns out, the chemotherapy had not killed
enough cancer cells to make the bone marrow transplant worthwhile. Tragically, the patient would soon die.

It is strange, is it not, that this human being’s outcome depended on an
inch-wide sample of bone marrow? We do not think of people as bundles of
organs and cells but as whole, complete beings. We think of people
abstractly or even holistically — character or personality, physical and
mental abilities, age. Who cares about the cells in their marrow? What
bearing does that have on the life to be lived? But it matters much more
than it seems. This small sample ends a life or gives fresh winds to a sick
life. It is counterintuitive to the way we think, but it is how we make
decisions in medicine. We treat the person but we also treat the disease.
If the disease still exists and runs rampant within the body, the person, no
matter how admirable, familiar, and recognizable, will perish.