Honoring the stories of illness | Dr. Rita Charon | TEDxAtlanta

What can a doctor do with her patients' stories? How can the telling of and listening to stories create "clearings" for patients and doctors - and anyone - to aid in healing work?

Rita Charon is founder and Executive Director of the Program in Narrative Medicine at Columbia and New York-Presbyterian Hospital. She completed her MD at Harvard in 1978 and her PhD in English at Columbia in 1999. Her research focuses on doctor-patient relationships, narrative skill in medicine and reflective practice. She has received a Rockefeller Foundation Bellagio residency, a Guggenheim Fellowship and research funding from the NIH, the NEH and several private foundations.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at http://ted.com/tedx.

Thanks very much.

So, here's a doctor from New York,

dressed in black,

talking to you on September 13th.

And you're going to think
I'm going to talk about death,

as did all New Yorkers
over the past many days and weeks.

Well, I am.

But I'm going to talk with you about that

in terms of joy and in terms of truth.

I need to tell you
a little bit about my medicine

in order to get to the joy.

Todd is right that I came to medicine,

not knowing a whole lot about it,

but I came to medicine
because I was a life-long reader.

I was the kind of kid who would get
10 books out of the library

and read them all before they were due,

and I hope many of you were like that too.

And as a reader, I understood,
once I opened my practice,

once I finished all the business
of staying up all night being an intern,

that what I did in the office,
what patients paid me to do,

was to pay exquisite attention
to the narratives that they gave me -

which were in words, in silences,

in those facial expressions
that we saw earlier today,

in their body, in how the body changed,

in the tracings and pictures
that we had of their body,

in what other people said about them -

and that it was my task
to cohere these stories

so that they, at least provisionally,

made some sense;

to take these multiple
contradictory narratives

and let them build something
that we could act on.

So that's what we did.

I realized right away

that I didn't know very much about stories
even though I was a voracious reader,

and I went kind of timidly
to the English department -

I was at Columbia already -

I went to the English department;

I said, "Could you teach a doctor

something about stories
and how they work?"

And God bless them,

the English department
was very happy to take me in.

You know, I wrote prescriptions for them;

(Laughter)

I gave them referrals.

But I think they really joined me
in the idea that the knowledge they had,

very specialized narratological knowledge,

could do something good in the world.

They didn't let me out
until I had a master's degree, a PhD.

They let me write a dissertation
on Henry James, who is my beloved author.

And I want to tell you
how the story training -

awakening and nourishing
my own sense of story -

how it transformed
my teaching and my practice.

This was not the first time that anyone
had put literature with medicine.

By then - this was the '90s already -

by then, there were persons in -
I hope you know this -

in philosophy, in history,
in literary studies, in ethics

who had come into medicine,

and they were all helping us
to improve our practice

based on human learning

in addition to the scientific
knowledge we all had.

So, I was by no means the first one

to bring literary studies
into the practice of medicine.

But somehow, by starting as a doctor first

and then getting all this training
in stories and how to understand them,

I think I had a more -

my sleeves were more rolled up
in using this knowledge.

So my colleagues and I at Columbia

kind of invented, or created, a field
that we called "narrative medicine,"

which we define very simply
as clinical practice

fortified by the knowledge
of what to do with stories.

So that with these skills -

in first of all having a sense of story,

and then being able to recognize
when someone is telling you a story,

to absorb the story,

to receive it whole,

to receive all of it,

including even those unsaid
hints and guesses

about what might be left unsaid,

to absorb them,

to interpret them,

to honor them,

and then to be moved by them

and to be moved by them to action.

So this is what we called
narrative medicine.

We found very effective, economical ways

to teach

the skills of reading and writing
and storytelling and receiving

to medical students, nursing students,

doctors, social workers,
chaplains, patients, families -

all the people who come
in and out of hospitals.

I'm assuming that some of you
are from healthcare,

either as professionals
or as patients or as families.

You know the kinds of silences
there are in those elevators in hospitals.

You know what happens
when you pass someone in the hallway

who has no legs or who's bleeding.

You know that.

Our challenge was to bring
to these people,

perhaps used to illness,

perhaps hardened against it,

ways to open their own springs
of imagination,

of creativity,

of receptivity

so that they would not just
not lose their sense of story,

but, indeed, build it.

There were amazing
transformations in my practice.

I work in a rather shabby clinic
in Presbyterian Hospital,

which is in New York - in the way,
way upper parts of Manhattan -

and as I improved
my own capacity to read closely,

where every word counts,

I was able to learn how
to listen closely,

where every word counts,

So, in the office,
when I saw a new patient,

I wouldn't ask millions
of questions anymore,

like, no doubt, many of you
have been asked by doctors.

Typically what we do,
faced with a stranger,

is we kind of start at the top
and work down.

I'm sure you've had this:

Do you have headaches?

Do you have nosebleeds?

Do you have trouble with your hearing?
With your swallowing?

Do you have trouble with your breathing?

And all the way down.

And what operations have you had?

And what allergies do you have?

And what medicines are you on?

So I learned not to do that,

and instead to say,

"I will be your doctor,

and so I need to know a great deal

about your body
and your health and your life.

Please tell me what you think
I should know about your situation."

And when I did that,

and when I let persons simply answer,

instead of writing things down
or typing or computing,

I would simply sit in my chair,

hands in my lap,

and absorb what was being said.

And what I learned,
right from the beginning,

is that persons were not only able
but deeply thirsty

to give profound, detailed,

eloquent accounts of themselves.

They didn't always know how
or how to start.

One woman says, "You want me to talk?"

(Laughter)

Another man, one of the first
to whom I made this invitation,

started to tell me
about the death of his father

and then the death of his brother

and then the trouble he was having
with his teenage son.

And then he starts to cry.

I broke my silence:
I said, "Why do you weep?"

He says, "No one
ever let me do this before."

So a woman I saw - I just saw her
a few days ago when I made a house call.

Well, she's been my patient
for a long time.

She -

as anyone I speak about
or [write] about,

knows what I'm to say,

has read what I've written

and has given, as we say,
informed consent for me to do so.

So I'm not breaking any secrets.

I certainly won't use the name,
but she has - we have her blessings.

She had breast cancer 20 years ago.

She had a mastectomy -

sorry, she had a lumpectomy,
small operation.

She was on medicine for five years;
she was told she was cured.

About a year ago, she developed
a lump in that same breast.

On biopsy, it was a new cancer.

She was stoic about the recurrence.

She underwent a mastectomy this time.

It's a big operation;
it was a disfiguring operation.

She declined breast reconstruction.

She said she was too old for that.

And she recovered uneventfully
from the surgery.

But then she began to worry
that the cancer would come back.

She was in my office every other week.

On the off-week, she was
in the office of the breast surgeon.

She felt a new lump;

she felt something funny under her arm;

there was something
not right about the scar.

She was terrified that it would come back.

We kept reassuring her:

"No, that's just how the tissues heal";

"No, that's your cancer markers."

We did blood tests
to make sure there was no cancer.

I did an ultrasound of the scar.

She could not be reassured,

and so she thought
that we were deceiving her.

Finally, after another one of these exams,

breast examinations in the office,

I thought I could imagine
what was deep to the scar.

I leaned back
against the sink in my office.

I told her I thought
I understood what the fear was.

I told her I thought what she feared
was that she would die,

that she had the courage and the vision
from these two illnesses

to know what many of us know
but refuse to really face up to:

that is simply we will die.

I told her that I thought
she was in the glare of this knowledge.

I said, "We don't know
what will end your life.

Your body may well harbor now
the disease that will do so.

It might be the breast cancer.

It might be something else.

But we know something
will take your life."

I said I couldn't do more than we had
to assure her of her health,

but here is something I could do:

I could stand with her
in the glare of that fear.

And right after that conversation,
I checked back with her by phone.

She said she felt much better.

She felt much more relaxed.

She wasn't worried the way she had been,

and she was sure that I was right.

Now, the way I knew that,

the way I came to understand it
is that I'd been writing about her,

and I'd been showing her
what I wrote about her.

And in that way, we made contact
through her illness,

through her fear,

through the glare of death

that was there now, in the room with us -

as it always is -

but there it was in the room with us,

and we could ...

accept it.

And more than that,
we made contact through it.

It helped me and this woman
to understand what medicine is for,

and even bigger than that,

in excess of the medicine,
what ordinary living is for.

It's for the making of contact.

It's through the contact.

And of course, illness exposes,

so that I'm privileged as a doctor

to be in situations where there is
very little separating me from a patient.

Do you see what I mean by "exposes"?

You're down to the floor of who you are
in the presence of illness.

So, not only did we kind of help
the immediate problem

with her own fear,

but we made enduring,
life-long contact -

the two of us.

This is possible all the time.

This is possible all the time.

I told her -

I think I told her about a novel
by John Banville called "The Infinities,"

in which he overhears Zeus

up on Mount Olympus

looking down at these mortals
that he's created,

and Zeus envies the human beings
their mortality.

He says, "It's your death
that gives your lives meaning."

And so my patient and I understand that,

that it's in the dying,
in the limits of the life,

that we have our meaning,

and that we pour ourselves
into those things that endure -

the family, progeny,
work, art, dance,

life,

play.

Those things that will endure

in time and with others

are those things that give us meaning.

And they're only available to us

through the presence
and the truth of death.

When I say, "What is medicine for?"

my patients have been able to teach me,
as have my students, what it's for.

When we teach narrative
medicine in groups,

it doesn't matter who - doctors,
nurses, chaplains, patients, families -

we all join together in a clearing.

These narrative storytellings
help us to form clearings -

you know, in the forest

when the trees kind of thin out,
and it's moss and it's ferns? -

and we're able,

many different ones of us

from often rather divided camps,

can come together
in the clearing of storytelling,

and within the clearing
of this human gift of mortality,

and that's where the truth is exposed,

and that's where the freedoms emit.

What medicine is for

is to donate the expertise
to an act of fidelity,

to give someone company

and to form staunch, sturdy affiliation

within our clearings,

within our dyads,

within our shabby clinics

so that no one has to be
in the glare of sickness,

or even the glare of death,

alone.

I'm fortunate to be a doctor
to be able to do this.

Anyone in any enterprise

has the chance for making contact,

as in this room - a clearing.

Thank you.

(Applause)