What Patients Say, What Doctors Hear

207 Pages·2017·1.04 MB·English

by  Danielle Ofri

For Naava, Noah, and Ariel
ALSO BY DANIELLE OFRI
Singular Intimacies: Becoming a Doctor at Bellevue
Incidental Findings: Lessons from My Patients in the Art of Medicine
Medicine in Translation: Journeys with My Patients
Intensive Care: A Doctor’s Journey
What Doctors Feel: How Emotions Affect the Practice of Medicine

Contents
CHAPTER 1
Communication and Its Discontents
CHAPTER 2
From Both Sides Now
CHAPTER 3
It Takes Two
CHAPTER 4
Now Hear This
CHAPTER 5
With All Good Intentions
CHAPTER 6
What Works
CHAPTER 7
Chief Listening Officer
CHAPTER 8
Listen to Me
CHAPTER 9
Just the Facts, Ma’am
CHAPTER 10
Do No Harm
CHAPTER 11
What Lies Beneath
CHAPTER 12
The Language of Medicine
CHAPTER 13
Rushing to Judgment
CHAPTER 14
Can It Be Taught?
CHAPTER 15
A Fragile Truce Shatters
CHAPTER 16
Can We Talk?
Acknowledgments
Notes
Index
CHAPTER 1
Communication and Its Discontents
It was late on a Thursday evening and I already had one foot out of the clinic
door when my office phone rang. It was Oumar Amadou.1 “I am not feeling
well,” he said. “I need to see you, Dr. Ofri.”
The sun had set and the clinic was closing up. I had already locked up my file
cabinets and turned off the computer. “I need to see you now,” Mr. Amadou
said. The annoyance in his voice was apparent even with his thick West African
accent.
In the few months I’d known Mr. Amadou, I’d probably fielded fifty phone
calls from him. He always had something bothering him, or needed a form filled
out, or a medication refilled, and he always needed it right away. He constantly
showed up at the clinic without an appointment, assuming I would be available
to see him right then and there.
But he also had a severe heart condition, even though he was only forty-three
years old. At our first visit he’d hauled out a tome of papers from a cardiologist
in Pittsburgh. The papers detailed a severely malfunctioning heart, one that had
required a pacemaker, a defibrillator, and several stays in the ICU.
So when he called on a Thursday evening, I took his concerns seriously,
despite the irritating tone of his voice and my depleted reserve of patience for
him. I questioned him about his symptoms to see if he might be experiencing
congestive heart failure or an arrhythmia—things for which I would send him to
the emergency room immediately.
But he had no specific symptoms, just a vague sense of not feeling well. I
wasn’t scheduled to be in the clinic the following day, Friday, but because of his
poor heart I didn’t feel comfortable having him wait until Monday.
“Please come to the clinic tomorrow,” I said, “to the urgent-care section.” I
explained that I wouldn’t be there but that he would be evaluated by one of my
colleagues.
When I arrived on Monday morning there was an indignant voice-mail
message from Mr. Amadou. “I come Friday, but you no there, so I go home. I
need to see you!” My hands slapped into my lap with frustration. Either he
hadn’t understood what I’d said or he was simply being stubborn.
The next three days were a series of missed phone messages between us. If he
was feeling sick, I told him, he should come to urgent care right away. If he
didn’t feel too bad, we could give him a regular appointment. He left repeated
voice mails saying, “I need to see you, Dr. Ofri,” seeming not to acknowledge
any of my messages to him. Whenever I called back, I got only his voice mail.
Midday on Thursday, just as I was saying good-bye to the last of my morning
patients, contemplating the possibility that I might actually have five minutes for
lunch, Mr. Amadou popped into my line of sight. It had been a week now that
we’d been trading messages. Tall and lanky, dressed in a powder-blue tracksuit,
he signaled anxiously at me. “I need to see you, Dr. Ofri,” he called out. “It is
very important.”
I was unprepared for the rush of anger that flooded over me. It wasn’t just that
I was about to lose that rare opportunity to eat lunch after an exhausting
morning, but that Mr. Amadou would just walk in the door and assume I would
drop everything and give him a medical evaluation that instant.
Yes, he had a bad heart and all, but that didn’t give him a free pass to be so
demanding. Obviously, whatever was bothering him couldn’t be so bad given
that he’d chosen to spend the week trading messages with me rather than come
to the urgent-care clinic. I needed to draw a line.
“Mr. Amadou,” I said tautly, “you cannot just show up to the clinic without an
appointment.”
“I come here to see you, Dr. Ofri,” he said.
“Yes, I know,” I said, growing more exasperated. “But I have other patients
with scheduled appointments. If it’s something that can’t wait, you can use the
urgent-care clinic today. Otherwise, you need to make an appointment like
everyone else.”
“I no see other doctor,” Mr. Amadou said. “I only want to see you. I need to
see you today.”
I knew that if I gave Mr. Amadou a medical visit right now, I’d reinforce the
idea that he could simply walk into my office at any time. He’d be at my
doorstep every week! But I also understood the severity of his cardiomyopathy
—this was not the type of patient I could take a chance on, annoying or not.
“Okay, Mr. Amadou,” I said, sighing heavily, “just a quick visit. Next time
you must have an appointment.”
Mr. Amadou smiled broadly as I led him from the waiting room and I knew I
was going to regret this decision. He had now figured out how to get an instant
appointment: just be annoyingly persistent until I caved.
The medical assistant was about to leave for lunch also but I gave him a
beseeching smile. “Could you please do a quick set of vital signs for Mr.
Amadou?” I asked. He hesitated, raised an eyebrow, then finally assented. With
relief, I gestured for Mr. Amadou to enter the assistant’s room.
Mr. Amadou took two steps and then paused in mid-footfall. It was like a
movie that abruptly froze, catching a character in the midst of an action. He
seemed to hold his lanky body aloft, almost as though the muscles were debating
whether to move it forward or backward. But it was all an illusion, as he
collapsed to the floor with a heart-stopping thud.
There is always that dreadful moment of silence—probably less than a second,
but it feels like an hour—when you realize something terrible has occurred. It’s
that stomach-lurching moment as your body and mind are shocked from the
ordinary to the emergency. It’s a vexing if brief time lag in which you need to
blink several times, it seems, before you can accept the new reality.
I dropped to my knees and pressed my fingers to his neck to check a pulse.
“Mr. Amadou,” I shouted. “Can you hear me?” He was breathing rapidly, his
upper back slumped against the door frame, the rest of his lengthy body
stretched out in the hallway. “Tell me what’s going on. Are you having any
pain?” He placed his right hand over his chest. “My heart,” he said faintly, and I
was swamped with a horrific wave of guilt.
By now a crowd had gathered around. The nurse was checking Mr. Amadou’s
blood pressure. His pulse was 130. His fingers were so cold that the oxygen
saturation monitor could not pick up a reading. I called for oxygen and a
stretcher while I crammed my stethoscope under the jacket of his tracksuit. We
loaded his listless body onto the stretcher and began wheeling him rapidly to the
emergency room.
Disconsolate, I held Mr. Amadou’s hand as we pressed down the hall, striding
briskly to keep my pangs of remorse at bay, praying that he was going to be
okay. We rolled him into the triage bay of the emergency room and I explained
the situation to the ER doctor while the nurses hooked up monitors and started
an IV. As we finished the handoff of medical care, I turned back again to Mr.
Amadou. I took his cool, clammy right hand in my two hands and gave it a
squeeze. His fingers were frigid.
I apologized for berating him in the waiting room and for all of our
miscommunications during the week. He opened his eyes to my words but was
too breathless to speak. He nodded slightly and then squeezed my hand weakly.
I trudged back to the clinic, staring down at the linoleum floor the whole way.
Despite my efforts not to, I couldn’t hold back from dissecting in minute detail
the events that had just transpired, trying to figure out the mistakes. Mr. Amadou
had been demanding, probably unreasonably so. And I had put my foot down,
perhaps a bit too decisively.
But maybe the problem was more basic than that. Maybe we just weren’t
hearing each other. True, we had a language barrier, but he navigated fairly well
in English, and I used a French interpreter whenever we discussed anything
complicated. I didn’t really think it was a problem in understanding the actual
words, more a problem of hearing what the other person was trying to convey.
For all of his annoying mannerisms and pushiness, Mr. Amadou was
fundamentally trying to say, “Help me.” Deep down, no doubt, he was terrified
that his heart could give out at any moment. This fear informed all of his actions.
Seen in this light, his relentlessness was understandable—his life hung in the
balance—so he could never take no for an answer.
But his relentlessness was smothering to me. Every time I turned around, it
seemed, there was Mr. Amadou jockeying for my time and attention. I wanted to
help him but his insistence on being front and center depleted me. I accept that
my job requires me to put my patients’ needs before my own, but Mr. Amadou’s
unending demands made me defensive and eventually angry. I could no longer
hear what he was saying because I was busy reacting to his forceful behavior. I
was expending so much effort drawing a protective line in the sand that I could
not hear his pleas for help. I could not make the connection that the very
annoyance of his behavior was itself a plea for help, a declaration of fear and
vulnerability.
For all of the sophisticated diagnostic tools of modern medicine, the
conversation between doctor and patient remains the primary diagnostic tool.
Even in the fields that are visually based, such as dermatology, or procedurally
based, such as surgery, the patient’s verbal description of the problem and the
doctor’s questions about it are critical to an accurate diagnosis.
In some ways this seems almost anachronistic, given how advanced so much
of our technology is now. Science-fiction movies predicted that medical
diagnosis would be achieved by running a handheld machine over the patient’s
body. And indeed much diagnosis is made with MRIs, PET scans, and advanced
CT technology. Yet the simple verbal exchange between patient and doctor
remains the cornerstone of medical diagnosis. The story the patient tells the
doctor constitutes the primary data that guide diagnosis, clinical decision-
making, and treatment.
However, the story the patient tells and the story the doctor hears are often not
the same thing. The story Mr. Amadou was telling me and the story I was
hearing were not identical. There were so many layers of emotion, frustration,
logistics, and desperation, that it was almost as if we were in two different
conversations entirely.
It is a common complaint of patients. They feel their doctors don’t really
listen, don’t hear what they are trying to say. Many patients leave their medical
encounters disappointed and frustrated. But beyond being merely dissatisfied,
many patients leave misdiagnosed or improperly treated.
Doctors are equally frustrated with the difficulties of piecing together a
patient’s story, especially for those with complex and inscrutable symptoms. As
medicine grows more complicated, with illnesses more multifold and complex,
the gap between what patients say and what doctors hear—and vice versa—
grows more significant. I began writing this book to examine these interactions
between patients and doctors, to explore how a story traverses from one party to
the other.
It’s clear that doctors and patients don’t start out on equal footing—the patient
is the one with the fever, or who is short of breath, or who is panicked that a
lump on the neck is cancer. The patient starts out in a more vulnerable position.
But, also, the stakes are much higher for the patient, who has far more to lose if
things go wrong. So it’s fair to say that the doctor bears more of the
responsibility in ensuring that the story is understood correctly. Nevertheless, it
is still a two-person encounter, with each person bringing his or her own biases,
history, strengths, and liabilities.
In Mr. Amadou’s case, there were mutual missteps that served to worsen his
medical condition. If either or both of us had been better able to listen to the
other, perhaps Mr. Amadou might not have ended up in the intensive-care unit
that afternoon. Medical care is a shared endeavor and communication is its sine
qua non.
In this book I trace the paths of several patients and doctors, examining how a
story travels from one human being to another. By exploring the challenges and
pitfalls, as well as the collaborations and the successes, I hope to illuminate the
role of this most potent diagnostic—and therapeutic—tool in medicine. The
more technologically advanced medicine becomes, the more we are reminded of
the crucial role of the story.
After Mr. Amadou was safely in the emergency room, I returned to the clinic
and saw that the afternoon session was already in full swing. Lunch was long
since out of the question, but I’d lost my appetite anyway. Besides, charts were
already stacked in my box. The clerk handed me the first one. “Mrs. Velasquez
doesn’t have an appointment for today but asked if you could squeeze her in.”
The impress of Mr. Amadou’s chilled hands still seemed to linger in mine. His
pleas for help, however frustrating, still echoed in my head. “Whoever shows