Truth-Telling in the

‘Metaphor Clinic’:
Language, Ethics, and Pediatric Pain
Mara Buchbinder, PhD
Department of Social Medicine
Center for Bioethics
University of North Carolina at Chapel Hill
My background
• PhD in Anthropology
(medical and linguistic)
• Research: clinical
communication and the
patient-provider relationship
• In pediatrics: how clinicians
and families navigate
partnerships for managing
children’s chronic illnesses
 Overview and Objectives
• Overview: report findings from a multidisciplinary
ethnographic study of a pediatric pain clinic in California.

• Objectives:
• To identify ethical issues in clinical communication
about non-malignant pediatric pain.
• To describe the role of metaphors in clinical
explanations of pediatric pain.
• To analyze whether child-friendly metaphors raise
concerns about deception and truth-telling.
Clinical Background
Ethical Challenges
• Uncertainty, doubt, and mistrust
• Epistemic uncertainty: How can we know if the patient is ‘really’ in pain?
• Ontological uncertainty: What is the nature of the pain?
• Prognostic uncertainty: What will the pain mean for the future?

• Concerns about trust and patient abandonment

• Children/adolescents as unreliable narrators

• Navigating triadic clinical relationships

An Anthropological Perspective
• Attention to meaning
• Concern with the moral dimensions of suffering
• Examining how pain management fits into routines of everyday life
• Communicating private experience
Explanatory Models of Illness
“...the notions about an
episode of sickness and
its treatment that are
employed by all those
engaged in the clinical
process”
(Kleinman1980:105)
Clinical Metaphors
• Metaphor is a basic mechanism of the human
mind that tacitly shapes how we think and act

• Metaphors encode implicit assumptions

about body and mind

• Clinicians use metaphors to convey a

particular stance on a problem
Research Questions
• How is pediatric pain treatment culturally and
institutionally organized?

• How do pediatric pain practitioners explain chronic,

intractable pain to patients and families?

• How do patients and families understand these

conditions?
The West Clinic
Multidisciplinary team:
Physicians (3, 1 psychiatrist) Psychologists (3,1 child/family)
Physical therapists (2) Acupuncturist
Music therapist Art therapist
Cranial sacral therapist Yoga instructor

Typically referred by other pediatric subspecialists

Treatment: 2 hour initial consultation with physician, then referred
to 2-3 providers for ongoing care

Weekly meetings to facilitate coordinated approach

Methods
• Observations
• Patient encounters
• Team meetings
• Interviews (n=76)
• Patients
• Parents
• Clinicians
• Video-recordings of 4 focal families
Participants
• Patients ages 11-18 • Largely white, mostly high
SES
• Most common pain dx:
• Musculoskeletal • 2/3 had been in pain for >6
• Abdominal pain months
• Headaches
• Chronic regional pain • Almost half not attending
syndrome school
Key paradox: Pain is viewed as
the quintessential private
experience…

…but it is explained, understood,

and experienced in ways that are
deeply relational.
Neurobiological Metaphors
• Clinicians are committed to legitimizing all pain as “real”… …but
families are predisposed to have pain delegitimized based on
past experiences.

• Explanatory challenges:
• How to convey that psychological factors are important?
• How to manage expectations for a concrete diagnosis?

• My argument: neurobiological metaphors can help to address

these interactional challenges.
The Software Model
“We’ll often use the software-hardware model. I don’t know if
you’ve heard [of] that model, too. So that’s why everybody’s
looked inside of you, they haven’t found anything wrong, it’s
because the software is the problem. … What got it going?
Well, any number of things. A family history of this kind of
problem might make you more vulnerable. We know that
stress is responsible for all kinds of hormone production, and
those stimulate the nerves. And yada, yada, yada, yada. And
they’re just firing, firing. So we get away from the
psychosomatic.” – MD Director of Pediatric Pain program, Eastern US
The Software Model
CENTRAL METAPHOR: “Chronic pain is malfunctioning software.”

COROLLARY: “Chronic pain is NOT malfunctioning hardware.”

“You’ve got pain!”

Pain!
 Case Vignette
• Patient Michael Harris (a pseudonym), 12 y.o. boy

• Academically gifted

• Bullied in public middle school (7th grade)

• Developed chronic abdominal pain

• Stopped attending school by January 2009

• First clinic appointment in May 2009

VIDEO EXCERPT #1
Dr. Novak: And what it is is, it's actually a real condition,
it's not just cuz they can't find anything else
Rob: Okay
Dr. Novak: And what it is is, it's actually not in the
intestinal tract it's the nerve signaling
bet[ween the brain and the gut
Michael: [Yeah
Rob: O[kay
Dr. Novak: [Between the brain and the intestine. That's
called a neuro-enteric system. Nervous system.
And what happens in IBS is the system
becomes out of balance. The nerve signaling
system. So if we had an electrical engineer to
look at the wiring we'd see where the problem
is. So- we're not doing any tests, we don't need to.
Michael: Not today
Dr. Novak: No, not at all
VIDEO EXCERPT #2
Dr. Novak: And so what happens is in really smart
kids, you know, just like you learn things
quickly, your brain makes connections
quickly, you see things faster than other
people may [or you get things faster
Michael: [Oh, your nervous system works faster
Dr. Novak: Your nervous system works faster. It gets it faster.
But it also makes the pain signals get it faster.
((6 lines omitted))
Dr. Novak: But it’s gonna be good cuz it’s gonna
help you get out of it once you
[know what to do
Michael: [O:::h
Dr. Novak: So this is the good- that's the good news.
The bad news is you [more likely to get it
but the good news
Michael: [Oh but if you get into something faster
you get out of it faster
Dr. Novak: Exactly. Once you know what to do.
 “faster”
LEARN “REALLY SMART KID”
“faster”
MAKE
CONNECTIONS
“faster”
SEE THINGS
“faster”
GET THINGS “faster”

PAIN-FREE
“faster”
PAIN SIGNALS
NEUROBIOLOGY OF
“BEING SMART”

PERSON IN PAIN
VIDEO EXCERPT #3
Dr. Novak: So it's the part that's in your head, that part of your
brain, we know can start over-writing, and it's like, it's
like erasing the pattern
Michael: [How would that happen
Dr. Novak: [and creating a new pattern through using imagery
Michael: But-
Dr. Novak: with something called hypnotherapy
Michael: Oh, I like hypnotherapy=
Dr. Novak: And uh Charlotte Lefevre who's part of our program is-
she works out of her home which is in [name of town]
so you just park right outside and go in, makes it easy.
Um, and she is a master at helping you learn to start
erasing that and replacing=
“You know we tend to call our clinic the smart clinic
because there’s something about the neurobiology of
being really smart that has to do with—not just
neurotransmitters but neural connections are made very
easily. And that's why if you learn easily…that kind of
chronic pain signaling problems can develop … that’s
why you might have a bunch of kids with a Paras defect
and most don't even know it, cuz it's asymptomatic. But
that combined with an injury combined with something
that turns on the nervous system in kids who are really
smart…those nerve connections connect and keep a
signal going.” –Dr. Novak, Director of West Clinic
Tabitha Clarke
• 17 y.o. girl with allover body pain
• Solid B student

Dr. Novak explained that Tabitha has the neurobiology for

someone who is talented in certain areas (i.e., music) and this is
why she got “knocked off balance.” When the system gets
dysregulated, it’s like a snowball rolling downhill, getting bigger
and bigger because it accumulates more mass. Dr. Novak said
that because Tabitha is a very creative, sensitive person, it’s not
surprising that all this wreaked havoc on her emotions. Yet it’s not
emotional—it’s real. (Field notes, April 20, 2009)
Stephanie Morton
After Stephanie described her symptoms, Dr. Novak explained that
the kids she sees in pain clinic tend to be perfectionists who push
themselves hard and excel in school and extracurricular activities.
She told the Mortons that these kinds of children have something
particular about their neurobiology, the nerve cells make
connections easily, and the pain pathways get set up quickly. She
explained that this was the downside of being smart, but once
Stephanie knows what to do to manage the pain, her smartness
and perseverance will help her climb out of it. “All this,” Dr. Novak
said, “And I haven’t even examined you yet. But I know what I’m
going to find.” (Field notes, April 13, 2009)
Smart Neurons as Class Marker
• Prototypical West Clinic patient: exceptional, smart, high-
achieving

• Some of the activities that marked these categorizations were

socioeconomically marked
• e.g. AP class
• Sports and clubs vs. after-school jobs

• Explanatory model was informed by background assumptions

about social class
 Neurobiological Legitimacy
• Smart neurons explanatory model framed pain in a
neurobiological register that worked to legitimize suffering.

• The model transformed chronic pain into a positive experience

that could be mobilized for therapeutic success.

• Metaphors for neural circuitry transform pain from an abstract,

uncertain phenomenon to one that is clear and concrete.

• Metaphors can legitimize providers as well as patients.

Father: He nailed it, though, the first time we met
you guys. He said several things that made
sense which made it easier for us either,
one, to understand, or two, explain it to
people. And what she’s going through now,
you know, is the AOL account.

Mother: You know, ‘You’ve got mail?’ That was big.

Pain!
Metaphors for the Body
Truth in Diagnosis
• Is the ‘smart neurons’ framework deceptive?

• Smart neurons as placebo?

• The efficacy of ritual healing depends on the patient’s belief

in it. (Levi-Strauss 1963)

• A pragmatic approach to clinical communication

“The truth of an idea is not a
stagnant property inherent in
it. Truth HAPPENS to an idea.
It BECOMES true, is MADE
true by events.” (James
1907:62)
Explanations are “semi-
fictions” that provide
“explanatory satisfaction
where it is not otherwise
available.” (Keller 2003)
Four Forms of Clinical Truth
historical and narrative retrospective truths
Validity is evaluated on the basis of
the ability to describe past events.

scientific and prescriptive prospective truths

Validity is evaluated on the basis of
the ability to predict future events.
Truth in Diagnosis
• The smart neurons model runs parallel to scientific
knowledge rather than counter to it.

• clinical vs. scientific explanatory models

• “The choice of an [explanatory model] may be no more than an ad hoc
justification for use of one of a limited number of treatment alternatives or post
hoc explanation of why the others were not tried.” (Kleinman 1980:60)

• Smart neurons as a form of prescriptive truth

Conclusion
• Language is a critical therapeutic tool.

• Embrace and acknowledge physicians’ narratives and

explanations as well as patients’.

• Bioethical implications: a different frame on commonplace

concepts like shared decision-making.
Acknowledgments
• This study was funded by the National Science Foundation and the
Wenner-Gren Foundation for Anthropological Research.

• My scholarly work was also supported by the Brocher Foundation, a

UNC CTSA Interdisciplinary Clinical Research Career Development
Award (KL2TR001109), the Department of Social Medicine at UNC,
and UNC’s University Research Council.

• Thanks, especially, to the families and clinicians who participated in

the study.