Teaching the Rx Narrative; Story as Medicine

Teaching the Rx Narrative: Story as Medicine
Marie Ennis-O’Connor

Road Map
Introductions and expectations
What is story?
Storytelling exercise
Listening and empathy
Medicine as a storytelling activity
The illness narrative

Only humans tell stories. Story sets
us apart. For humans, story is like
gravity: a field of force that
surrounds us and influences all of
our movements. But, like gravity,
story is so omnipresent that we are
hardly aware of how it shapes our
lives.

PNAS.org: Speaker–listener neural coupling underlies
successful communication by Greg J. Stephens, Lauren J.
Silbert and Uri Hasson

“We need to move
away from the
perception that
social skills and
better
communication
are a kind of
optional extra for
doctors. A good
bedside manner is
simply good
medicine”.
Nirmal Joshi MD, Doctor, Shut Up and Listen, NY Times, Jan 4, 2015.

Why do physicians interrupt?
Why do physicians interrupt?

“ Listening to another person is an act of profound
humanity; it is an act of profound humility.”
Sayantani DasGupta MD, Narrative Medicine, Narrative Humility.

Arthur Kleinman MD calls it, a stance of
“empathetic witnessing.”

“My role as a doctor is
to listen, deeply and
compassionately, to ‘be
with’ the other person in
their suffering.”
Jonathon Tomlinson, Forgiveness, narratives and listening. A Better NHS

“Long before doctors had anything of interest in their
black bags – no MRIs, no lab tests, no all body CAT
scans – what they had was the ability to show up, what
they had was the ability to listen, and bear witness to
someone’s life, death, illness, suffering, and everything
else that comes in between.”
Sayantani DasGupta MD

“We hear a lot these days about personalized medicine,
about drugs and treatments that can be tailored to
specific genomic and epigenetic markers. But you know
what people really long for: personal medicine, not
personalized medicine. They crave a human connection.
Not just care, but caring.”
André Picard convocation speech delivered on May 14, 2015, to the graduating class of
medical doctors at the University of Manitoba.

Healing
Product A
• Feature 1
• Feature 2
• Feature 3
Greaves D. The Healing tradition:
reviving the soul of Western medicine.
“We live in a post-modern society
where a technocratic approach to
medicine is no longer considered
sufficient or desirable. Twenty-
first century patients are looking
for person-centred care: they
want to be listened to and to
have a dialogue with their doctor,
to be healed rather than cured.”

“The foundation of healing starts
with reassurance that they have
been seen and therefore valued
and appreciated for the human
that they are beyond the
disease”.
Adrienne Boissy MD. Staring Down the Barrel: Patient Narrative. How
listening to patient narrative improves clinical care.

“My desire to be a physician
had a lot to do with that
sense of medicine as a
ministry of healing, not just a
science. And not even just a
science and an art, but also a
calling, also a ministry.”
Abraham Verghese MD

"To love the sick, each and every one of them, as if
they were our own." I always think, when I hear that
"they are our own," that there isn't anything that
separates you and I from the people we are taking care
of in the hospital. It is the same fabric, the same
humankind.”
Abraham Verghese MD

Empathy
The psychological identification with
or vicarious experiencing of the
feelings, thoughts, or attitudes of another.

Clinical empathy is the
ability to stand in a
patient's shoes and to
convey an understanding
of the patient's situation
as well as the desire to
help.

Empathy is a multistep process whereby the
doctor's awareness of the patient's concerns
produces a sequence of emotional engagement,
compassion, and an urge to help the patient.
Benbasset, J., Baumal, R. What is empathy, and how can it be promoted during clinical clerkships? Academic Medicine. 2004.

Why Empathy
• Higher patient satisfaction ratings. (Riess, 2012)
• Lower risk of malpractice suits. Over 80% of malpractice claims are
the result of communication failures. (Hickson, 2002; Levinson,
2004)
• Patients who experience empathic care have better medical
outcomes. (Hojat, 2011; Rakel, 2009; Kaptchuck, 2008)
• Increased adherence to treatment recommendations. (Halpern,
2010)
• Enhanced empathic care and physician well-being are highly
correlated. (Shanafelt, 2005)

Empathy (1) makes patients more forthcoming about
their symptoms and concerns, thus, facilitating medical
information gathering, which, in turn, yields more
accurate diagnosis and better care;
(2) helps patients regain autonomy and participate in
their therapy by increasing their self-efficacy; and
(3) leads to therapeutic interactions that directly affect
patient recovery.
Halpern J. From Detached Concern to Empathy: Humanizing Medical Practice. New York, NY: Oxford University Press; 2001

Diabetes Study
• Assessed the empathy levels of 29 family physicians
using a standardized scale, then followed 891 of their
diabetic patients for three years.
• The patients of the doctors who'd scored high on the
empathy scale were far more successful at managing
their blood sugar levels than the other patients.
(Hojat et al., 2011)

"Doctors are explainaholics. Our answer to distress is more
information, that if a patient just understood it better, they
would come around.“
James A. Tulsky MD, “Oncotalk"

Obstacles
• Demanding work environment with heavy workloads
(Cash and Holland 1998).
• Little importance attached to empathy (Greenberg
et al, 1999).
• Cynicism (Testerman et al, 1996).
• Insufficient training and education (Clark, 2001).

“Students undergo a conversion in the third year of
medical school - not pre-clinical to clinical, but pre-
cynical to cynical. What we need in medical schools is
not to teach empathy, as much as to preserve it - the
process of learning huge volumes of information about
disease, of learning a specialized language, can
ironically make one lose sight of the patient one came
to serve; empathy can be replaced by cynicism.”
Abraham Verghese MD

“Physicians have been taught in medical
school that they must keep the patient at
a distance because there isn’t time or
because if the doctor becomes involved in
the patient’s predicament, the emotional
burden will be too great.
But beyond that, the emotional burden of
avoiding the patient may be much harder
on the doctor than he imagines.
A doctor’s job would be so much more
interesting and satisfying if he simply let
himself plunge into the patient, if he could
lose his own fear of falling.”

“Being emotionally detached or
well defended is now
contraindicated. We need to stay
in touch with our emotions,
because without them, we risk
becoming the kind of doctors
who go down the hall to see “the
gallbladder in room 2.”
Divinsky, Miriam. “Stories for Life: Introduction to Narrative Medicine.”
Canadian Family Physician 53.2 (2007).

Can we teach empathy?
“I speak of "practicing," rather
than "having," empathy
because I want to focus on the
professional skill component,
rather than the natural
endowment (i.e. more or less
hardwired) component.”
Jack Coulehan MD

When people learned that empathy was a skill
that could be improved — as opposed to a fixed
personality trait — they engaged in more effort
to experience empathy.
Schumann, Karina; Zaki, Jamil; Dweck, Carol S. Addressing the empathy deficit: Beliefs about the malleability of empathy predict
effortful responses when empathy is challenging.Journal of Personality and Social Psychology, Vol 107(3), Sep 2014, 475-493

“Empathy isn't just something
that happens to us - a meteor
shower of synapses firing across
the brain - it's also a choice we
make: to pay attention, to
extend ourselves.”

“Story becomes
the ground that
patients and
healthcare
professionals
travel
together.”
Jay Baruch MD

“Case presentations are highly
conventional narratives; strictly
ordered - their language
narrowly descriptive and
toneless in order to sort out the
patient’s subjective report of
discomfort from the physician’s
more objective view of the case.
This flatness aids the emotional
detachment felt necessary to
the care of the ill.”

“The case history was invented by Hippocrates. Since
then medical practice has been straitjacketed by its
artificiality, to the detriment of the patient's own
narrative. The traditional case history stifles the
patient's own narrative.”
Jeffrey Aronson MD Autopathography: the patient's tale. BMJ 2000.

“To restore the human
subject at the centre—
the suffering, afflicted,
fighting, human
subject—we must
deepen a case history
to a narrative or tale.”
Oliver Sacks MD

“Medicine begins with storytelling. Patients tells stories to describe
illness; Doctors tell stories to understand it.”
Dr Siddhartha Mukherjee

“Illness complaints are what patients bring to the
doctor. Disease - what doctors have been trained to see
however, is what the doctor creates in the recasting of
illness. The doctor reconfigures the patient’s illness
within a particular taxonomy “ a disease nosology, that
creates a new diagnostic entity, an “it” – the disease.”
Arthur Kleinman

“The story of illness that trumps all others in the
modern period is the medical narrative. The
story told by the physician becomes the one
against which others are ultimately judged.”
Arthur Frank, The Wounded Storyteller.

“When you lose that story, the
patient becomes a collection of
somewhat unconnected data
points.”
Nick van Terheyden MD

“Health care is supposed to build on the story with
each contact, but if we don’t know the story, each
contact becomes a closed episode of its own,
disconnected from every other episode. Fragmentation
results as the outcome of a nonstoried approach to
health care.”
Lewis Mehl-Madrona, M.D., Ph.D. Narrative Medicine: The Use of History and
Story in the Healing Process

Conventional medical training teaches students to view medicine
as a science and the doctor as an impartial investigator who builds
differential diagnoses as if they were scientific theories. This
approach is based on the somewhat tenuous assumption that
diagnostic decision making follows an identical protocol to
scientific inquiry—in other words, that the discovery of “facts”
about a patient’s illness is equivalent to the discovery of new
scientific truths about the universe.
Greenhalgh T. Narrative based medicine in an evidence based world. BMJ : British Medical Journal.
1999;318(7179):323-325.

“Talking to the patient more often than not provides the
essential clues to making a diagnosis. It is our oldest
diagnostic tool.
And as it turns out, it is one of the most reliable. The
great majority of medical diagnoses are made on the
basis of the patient’s story alone. None of our high-tech
tests has such a high batting average.
Dr Lisa Sanders

“The ability to acknowledge,
absorb, interpret, and act on
the stories and plights of
others.”
Rita Charon MD

Narrative Listening
Listening with, not to the patient’s story.
To
• Instrumental
• Acts upon the patient
• Physician driven
With
• Mutuality
• Collaboration
• Patient driven

Narrative Medicine Approach
• Listening to the story of the illness – not just the
disease.
• Sensitivity for the context of the illness experience
and the patient-centered perspective.
• Establishing a diagnosis in an individual context,
instead of merely in the context of a systematic
description of the disease.
• Being willing to bear witness to the patient's
suffering.

To “take a history” vs to “elicit a history.
"Building" a history rather than "taking" one.

Spontaneous talking time at start of consultation in outpatient
clinic: cohort study.
A study about spontaneous talking time of patients in general practice
points out that two minutes of listening is enough for 80% of the
patients to recount their concerns. Out of 335 patients only 7 needed
more than 5 minutes. The physicians of the study were trained
in active listening, and the study cohort consisted of
many difficult patients with complex medical histories.
Langewitz W, Denz M, Keller A, Kiss A, Rüttimann S, Wössmer B. BMJ. 2002 Sep 28; 325(7366):682-3

How might we harness and codify the power of
story in healthcare education and practice to
improve the value our healthcare system
provides, and work toward a vibrant Culture of
Health?

Start each patient visit with a simple exercise:
• Sit face to face without a clipboard or computer. For
the first two minutes, don’t write anything down.
Just be present for your patient.
• Listen for context: While your patient is talking, listen
for clues to challenges in the patient’s life that affects
his or her care.

Patients must be given the opportunity to tell the story
of their unique illness experiences. Knowing the patient
as a person allows the health professional to
understand elements that are crucial to the patient's
adherence: beliefs, attitudes, subjective norms, cultural
context, social supports, and emotional health
challenges.
Martin LR, Williams SL, Haskard KB, DiMatteo MR. The challenge of patient adherence.
Therapeutics and Clinical Risk Management. 2005;1(3):189-199.

Defining Narrative
• “Narrative” is bigger than story.
• A narrative includes stories within stories, all of
which help us make sense of our complex lives.
• Narrative is constantly changing.
• Narrative is the web of which each story told, is one
strand.

“Life is storied and narrative is the mode in which
meaning and values are stored.”
- Lewis Mehl-Madrona MD -

“Narrative provides meaning, context, perspective for
the patient's predicament. It defines how, why, and
what way he or she is ill. It offers, in short, a possibility
of understanding which cannot be arrived at by any
other means.”
Greenhalgh T, Hurwitz B. Why study narrative? Narrative based medicine: dialogue and discourse in clinical practice.

Stories are
“antibodies against
illness and pain.”

Patient Physician Physician-Patient Meta-Narratives

1. Patient Narrative
Why do patients tell stories?
• To make sense of our illness.
• To orient ourselves in the world of illness.
• To join with others through a common bond of
illness.
• To recover the voice that illness takes away.

“Narratives of illness can provide a
corrective to biomedicine’s objectification
of the body and, instead, embody a human
subject with agency and voice.”
Catherine Kohler Riessman. Illness Narratives: Positioned Identities

1. The restitution narrative
The illness is seen as transitory It is all about the body
returning to its former image of itself, before illness.
2. The chaos narrative
Life will never get better; no one is in control.
3. The quest narrative
Illness is the occasion of a journey that becomes a quest.

2. Chaos Narrative
“This illness narrative feels like being in a kayak in a
class five rapid. While you are going through the
rapids, time and place shift so rapidly, up and down,
right and left transpose so often, that one truly feels
inside a vortex, the way out of which is entirely
unknown in any one moment.”
Kaethe Weingarten. Making sense of illness narratives: Braiding theory, practice and the embodied life. Dulwich Centre Publications, 2001

“Some of my sickest patients tell me that they have
become isolated and alone because their illnesses have
become so overwhelming that they have nothing left to
talk about and they don’t want to burden their friends,
‘who have troubles enough of their own’. Friends may
be poor listeners because ‘they want to steer the
person back to being the person they were before.”
Jonathan Tomlinson, Forgiveness, narratives and listening. A Better NHS.

“To deny the living truth of the chaos narrative is to
intensify the suffering of whoever lives this
narrative. The problem is how to honor the telling of
chaos while leaving open a possibility of change; to
accept the reality of what is told without accepting
its fatalism suffering and unremitting pain”.
Arthur Frank

3. Quest Narrative
• Feature 1
• Feature 2
• Feature 3
• A story that revolves around an
adventure, or a journey (traveling
expedition).
• Reluctant hero answers the call.
• Epic scope (a lot is at stake for
protagonist).
• Obstacles must be overcome.
• Something gained (new qualities of
self; insights) along the journey.

All three narratives intertwine
“In most stories told by any deeply ill
person; few individual stories have
only one skeleton. Often in a
particular story, at a particular time,
one narrative type is foreground and
the others are back-ground. Shifts in
foreground and background map
changes in illness experience.”
Arthur Frank The Wounded Storyteller.

2. Physician Narrative
• Autobiographical accounts about life as a physician and caring for those who are sick.
• A special genre constitutes stories about physicians as patients.
• Reflective writing.

“I was fascinated by my patients there, cared for them deeply,
and felt something of a mission to tell their stories — stories
of situations virtually unknown, almost unimaginable, to the
general public and, indeed, to many of my colleagues. I had
discovered my vocation, and this I pursued doggedly, single-
mindedly, with little encouragement from my colleagues.
Almost unconsciously, I became a storyteller at a time when
medical narrative was almost extinct.”

“If we wish to know about a man, we
ask 'what is his story--his real, inmost
story?'--for each of us is a biography,
a story. Each of us is a singular
narrative, which is constructed,
continually, unconsciously, by,
through, and in us.
Biologically, physiologically, we are
not so different from each other;
historically, as narratives--we are
each of us unique.”
Oliver Sacks MD, The Man Who Mistook His Wife for
a Hat and Other Clinical Tales

Atul Gawande, The New Yorker, 09/14/2015

“We do such a good job of using
social media and the Internet to tell
people what we know, but we do a
lousy job of telling people who we
are. … And telling people who we are
has become really important.
When I set out to write these stories, I
set out to tell our patients who we
are, what it feels like on the other
side of the stethoscope.”

“Living this reality, I have come to
realize that illness doesn’t
necessarily make us “less”. Quite
the opposite. It can give us
perspective, depth, compassion,
empathy, wisdom, resiliency and
strength. It makes me a better
person, and a better doctor.”
Anne C. Brewster, MD - Massachusetts General Hospital. diagnosed
with Multiple Sclerosis, 2001.
Boundary Issues: A Doctor With MS Confides In Her Patient

3. Physician-Patient Narrative
“The unfolding and interwoven story between health care
professionals and patients” (Kalitzkus & Matthiessen
2009).
“Seeing patients…hearing them tell their stories, telling
our version, and merging the two…is a narrative act and
constitutes the essence of the clinical encounter.” (Jeffrey
Borkan).

“The distance between the parallel
narratives authored by patients and
doctors can be as wide as the Arctic
flats or as narrow as a sun’s lone ray.
Yet it always marks a third space, one
that belongs to neither but is shaped
by both. The space between them
can be filled with shared meaning.”
Kate Scannell. Writing for Our Lives: Physician
Narratives and Medical Practice. Ann Intern Med.
2002;137:779-781.

Space In Between
The relationship of storytelling is reciprocal and the story
space is for both the teller who shares the illness story,
constructs and knows the meaning of illness, as well as for
the listener who embraces the story. The story not only
becomes a point of access for meaning for the listener,
recognition and understanding of illness meaning with its
accompanying loss, pain and suffering, but it becomes an
opportunity for transformation.
Jane LaChance

“Sometimes we can help our patients to re-write their
stories. For instance, we might be able to help people
with chronic illness to move from a chaos story [of fear
and powerlessness] to a transcendent story [of hope],
allowing them to see themselves as people who have a
manageable disease, not as people who are in the
process of dying.”
Jeffrey Borkan

Helping Patients Construct Better Narratives
Discussion Points
1. What is a “better” story?
2. How might you help patient create a new story?
3. What are the inherent risks?

4. Meta Narrative
“Illness is considered a story being developed in a big story
of a patient life” (Dr Seiji Saito, 2003)
Our illness takes place in a sociocultural context which influences
our view of illness and of the sick body.
There are larger socio-political power structures that marginalize
certain sorts of stories and privilege others.

“Meaning is significant
because it not only reflects an
individual’s interpretation but
also directs behavior, attitude
and expectations. Therefore,
meaning impacts the care and
management of someone’s
illness.”

“How many times have we counseled patients to quit smoking or
lose weight? It wasn’t until I listened, without interrupting, that I
could really hear what smoking or obesity meant to patients.
One patient—and she was far from the only one—told me that
smoking was one of her best friends. She wasn’t self-
destructive—she was lonely. Quitting smoking might be a
triumph of will, but it would also be felt as loss. Another patient
told me that her large size was a comfort to her; when curled up
with a book or even sitting in a theatre or airplane, she felt she
was hugging herself, caring for herself in a way no one else did or
could.”
Miriam Divinsky, “Stories for Life: Introduction to Narrative Medicine.”Canadian Family Physician 53.2 (2007))

To sum up….
• For patients - narrative allows for the construction of
meaning; addresses existential issues of suffering.
• Diagnostic – narrative provides rich source of clues.
• Therapeutic – narrative is a framework for holistic
approach to treatment.
• Narrative provides context for individual, patient-specific
meaning of an illness.
• Narrative encourages empathy.
• Promotes understanding between clinician and patient.

By immersing themselves in
emotional accounts of
illness, students will expand
their capacity to adopt the
patient's perspective during
clinical work.
DasGupta S, Charon R. Personal illness narratives: using reflective
writing to teach empathy. Acad Med. 2004;79:351–6
Pedagogic – Stories are amore memorable way for medical students to learn –
grounded in experience; encourages reflection.

“Medicine has shifted its
focus to getting to know
and treat a disease
instead of getting to
know and treat the
person with the
disease.”
Oliver Sacks

“Their story, yours and mine --
it’s what we all carry with us
on this trip we take, and we
owe it to each other to respect
our stories and learn from
them.”
William Carlos Williams. Poet and Physician

“The practice of medicine is an art,
not a trade; a calling, not a
business; a calling in which your
heart will be exercised equally with
your head. Often the best part of
your work will have nothing to do
with powders or potions …”
Sir William Osler

Share A new insight
An “Ah Ha” moment
A new decision
A change of heart

Teaching the Rx Narrative; Story as Medicine

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Teaching the Rx Narrative; Story as Medicine