Download Evidence-based medicine and the anecdote: Uneasy bedfellows or

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ORIGINAL ARTICLE
Evidence-based medicine and the anecdote: Uneasy
bedfellows or ideal couple?
Jilleen Kosko1, Terry P Klassen MD MSc2, Ted Bishop PhD3, Lisa Hartling MSc2
J Kosko, TP Klassen, T Bishop, L Hartling. Evidence-based
medicine and the anecdote: Uneasy bedfellows or ideal couple?
Paediatr Child Health 2006;11(10):665-668.
La médecine non scientifique et la médecine
probante : Des compagnons mal assortis ou le
couple idéal?
Over the past 30 years, there has been a resurgence in the use of
storytelling and narrative in medicine. At first glance, the trend to
incorporate art forms into medicine appears to run counter to the rise
of the more objective and positivist evidence-based medicine movement. In the present article, the authors provide examples of the use
of storytelling and narrative in medicine, describe their origins, and
contrast this approach with evidence-based medicine. The authors
suggest that storytelling and narrative offer a complement to the science of evidence-based medicine. Finally, the authors describe a program of research to develop and evaluate the use of storytelling as a
communication tool between physicians and parents/caregivers of
children presenting to the emergency department.
Depuis 30 ans, on assiste à une résurgence du recours à la narration et au
récit en médecine. Au premier coup d’œil, la tendance à intégrer des
formes d’art à la médecine semble aller à contre-courant du mouvement
médical probant plus objectif et positiviste. Dans le présent article, les
auteurs fournissent des exemples du recours à la narration et au récit en
médecine, en décrivent l’origine et comparent cette démarche à la
médecine probante. Les auteurs postulent que la narration et les récits
complètent la science de la médecine probante. Enfin, les auteurs
décrivent un programme de recherche en vue d’élaborer et d’évaluer le
recours à la narration comme outil de communications entre les médecins
et les parents ou les tuteurs d’enfants qui arrivent à l’urgence.
Key Words: Anecdotes; Communication; Evidence-based medicine;
Narration; Storytelling
ince the 1970s, there has been a renaissance of narrative/storytelling in the health care setting. Western practitioners are reinvigorating this lost art in an attempt to
provide a more holistic and intuitive approach to patient
care. This is evidenced in the growing body of medical literature on narrative/storytelling; in fact, a PubMed search
using the term ‘narrative OR story’ yields almost 12,000 citations. Furthermore, medical schools across North America
are incorporating arts programs, more specifically literature
courses, into their curricula (1,2). The objectives of the present paper are to provide an overview of narrative/storytelling
in medicine; discuss narrative/storytelling in the context of
evidence-based medicine; and describe a program of research
to evaluate the effectiveness of storytelling as a communication tool in the emergency department (ED). While some
authors distinguish between narrative (consciously formulated, premeditated and coherent account [3]) and storytelling (informal relating of events), others use the terms
interchangeably (as we have in the present paper).
Evidence-based medicine was cited by The New York
Times (4) as one of the major, innovative ideas in 2001.
Still, we know that there may often be a lag of 10 to
20 years between the availability of evidence and the
application of recommendations for routine use in major
textbooks (5). Critical gaps remain between what is
S
known and what patients receive as their standard care
(6). While evidence-based medicine represents an important advance in the history of medicine, its full potential
is thwarted if patients do not receive the benefit of the latest research.
Contrast this with the rapid uptake of potentially new
but unproven interventions, when framed in the context of
a powerful anecdote. Parker Beck was a four-year-old boy
who had developed autistic symptoms at the age of two
years. In an effort to determine the source of constant diarrhea and vomiting, he underwent an endoscopy, during
which he received intravenous secretin. His parents subsequently noted a rapid and dramatic improvement of his
autistic symptoms. This remarkable story (7) aired on
NBC’s Dateline in October 1996:
“It seemed Parker no longer heard his parent’s voices.
He stopped talking, stopped sleeping through the
night and began oddly spinning…Parker was showing
all the symptoms of autism, one of the most terrifying
and hopeless diagnoses a parent can hear…Imagine
your child disconnecting from the world, (a) child
whose eyes look, but don’t see, whose ears hear, but
don’t listen, whose cries never end and doctors offer
little help.”
1Word
Monger Communications, Calgary; 2Department of Pediatrics; 3Department of English and Film Studies, University of Alberta, Edmonton,
Alberta
Correspondence: Lisa Hartling, Aberhart Centre One, Room 9424, 11402 University Avenue, Edmonton, Alberta T6G 2J3.
Telephone 780-492-6124, fax 780-407-6435, e-mail [email protected]
Accepted for publication June 1, 2006
Paediatr Child Health Vol 11 No 10 December 2006
©2006 Pulsus Group Inc. All rights reserved
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Science
Intuition/narrative
A
B
C
Figure 1) A theoretical model of the interplay between science and
intuition/narrative in medicine. Panel A shows the decrease in
intuition/narrative in medicine with a concomitant increase in the
scientific aspects. Panels B and C show a coming together and blending
of the scientific and intuitive/narrative aspects
The story continued by recounting the events following
the endoscopy:
“A few days later, something completely unexpected
happened. Parker’s diarrhea disappeared and he began
sleeping through the night for the first time in two
years…Parker, who had been totally nonverbal, was
now reciting flashcards as quickly as (the therapist)
could hold them up. For Victoria and Gary, it was
nothing short of a miracle. Their little boy was back,
talking and listening.”
The story was so powerful and convincing that it created
an immediate and dramatic response. Many parents and
caregivers approached their health care providers demanding this new and ‘effective’ treatment for their autistic children. Fortunately, there was a rapid response from the
research community. Fourteen randomized controlled trials
were performed after this story appeared, none of which
supported the effectiveness of secretin as a treatment for
autism (8).
This type of situation can be very frustrating for
evidence-based proponents. They believe that the evidence
is what is best for patients. Yet a simple anecdote may often
prove more powerful in persuading other health care
providers or patients and their families to adopt a particular
approach to management.
The verbal transmission of medical traditions reaches
back to our earliest attempts to communicate, eventually
uncovering and illustrating the effectiveness of a medicine
by telling the story around its application and successful
conclusion, or conversely its failure. Information is handed
down from generation to generation via the story about
why something worked, how it worked, and why it is so very
important to maintain the tradition, protect the knowledge, and share the burden of this wisdom. Nomadic people
had no better place than their brains to carry the weight of
their continually expanding collective knowledge of how to
survive in their world.
Cognitive psychology may help to explain the continued
use of storytelling that transcends culture and time, in that
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there is evidence that the human brain may process stories
better than other forms of input. Humans have been
described as “primates who tell stories”, and that they are
“primates whose cognitive capacity shuts down in the
absence of a story” (9). Stories are an integral part of learning (10). Stories play a key and powerful role in the early
education and development of young children. The world’s
most renowned teachers have used metaphor and stories for
centuries (11).
Despite the power of storytelling and its universal
appeal, its use in Western medicine in the past century has
been usurped by more positivist, objective approaches to
the practice of medicine, a reductionistic understanding of
disease (1) and the rise of modern technology.
So, how did we get to this point? In an elegant piece in
The New York Times, Thernstrom (2) wrote:
“Once upon a time, until the last century or so, doctors had little in their tool bags except their humanity
with which to channel that mysterious thing we call a
healing encounter: that charged interaction – personal
and impersonal, physical and spiritual – upon which
so much depends. Now that blood tests have replaced
bloodletting, how can we make that interaction be
more rewarding?”
This led to our formulation of a theory that there may be
an inverse relationship between science and the intuitive
and narrative aspects of medicine (Figure 1). But must the
intuitive/narrative side of medicine necessarily succumb to
the rise of evidence-based medicine? There are an increasing number of health care practitioners who are seeking to
find balance between the two.
Narrative is used in many contexts, such as diagnosis
(12,13), therapy (14-16), and the education of patients,
students and practitioners (1,17-21). Historical examples of
the use and value of narrative are abundant. In the context
of paediatrics, a passionate debate over the optimal management of croup aptly demonstrates the frequent rift
between anecdote and evidence. The discussion over the
past 40 years at times has fallen between the ‘town and
gown’ groups, or between the anecdote and evidence-based
groups. In the early 1970s, Dr Coffin (22) wrote in a letter
to the editor (‘Corticosteroids in croup: Is there a reply from
the Ivory Tower?’), in which he stated:
“…I would like to state unequivocally that I am
strongly in favor of their (corticosteroids) use and feel
certain that they contribute a great deal to the reduction of morbidity and the necessity or endotracheal
intubation…I must contest, then, the double blind
studies which reveal no benefits of steroids in
croup…It is all very well for those who are practicing
in the ivory tower atmosphere of pediatric departments to run their double blind studies caring little
whether or not they are causing several croup patients
to have unnecessary surgical procedures.”
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Anecdote and evidence-based medicine
In a letter entitled ‘Reply from the ground level’,
Dr Menachof responded (23):
“The letter by Coffin demonstrates very clearly unacceptable reasoning. His unequivocal endorsement of
the use of steroids in viral croup is equally irrelevant
to my own 12 years’ experience demonstrating the
failure of steroids to affect the outcome…”
In the end, ironically, the evidence firmly supported the
anecdotal position of Dr Coffin, perhaps foreshadowing the
potential complementary nature of the anecdote and
evidence-based medicine.
The incontrovertible value of stories prompted us to
consider their use in our encounters with the parents and
children under our care. Out of this emerged a concept:
why not use the stories from parents of children who have a
disease to help other parents learn about the disease and the
role of evidence in managing an illness? Thus, we embarked
on a research program to investigate storytelling as a communication tool, whereby evidence and information are
transcribed through a form in which the focus is the personal experience of the family and patient rather than the
technical details salient to medical care and bodily functions (24).
There are few precedents in the medical literature for the
use of storytelling in this context. There has been some pilot
work done through the Centre for Global eHealth
Innovation (‘the Centre’) at the University of Toronto in
Toronto, Ontario. In a study completed in 2001, researchers
explored the value of storytelling in the context of screening
for colorectal cancer (25). The initial small study involving
16 patients evaluated stories delivered through the Internet.
The researchers found an increase in participants’ knowledge, but there was no impact in terms of ease of decisionmaking. Furthermore, while participants generally liked the
idea of sharing information through storytelling and the
Internet, the acceptability of the Web page varied according
to the personal preferences of the participants. Currently,
researchers at the Centre are evaluating a Web site called
“Things that matter: Stories about living with colorectal
cancer” (<www.storiesthatmatter.com>). Stories of patients
with colorectal cancer, complemented with photography,
can be viewed with or without sound and animation.
Our hypothesis is that we can effectively translate knowledge regarding the natural history and therapeutic management of a patient’s condition by couching it in a story that
engages the reader by providing perspective, context, emotion, compassion and understanding. Storytelling may be
especially appropriate in the paediatric setting, where “the
family is the patient”, and in which the patients are characters in a story that begins before and continues after the visit
to the ED. Moreover, the experience transcends that documented in the medical chart (26). Our belief is that the stories reduce parental anxiety; improve the parents’ satisfaction
with the medical encounter and the patient-provider
exchange; inform parents about the condition, its natural
Paediatr Child Health Vol 11 No 10 December 2006
history and its management; and assist in decision-making,
where applicable. Ultimately, we hope that this tool will
optimize patient outcomes and resource use in the ED.
The first step in our program of research was to gather parents’ stories, using croup as the initial target condition. We
chose croup based on several factors, including the frequency
of presentation to the ED, the anxiety it causes parents, the
strength of evidence for its management, and our familiarity
with the condition and the evidence. The creative writer
(JK) scheduled regular shifts in the ED, recruiting parents
who were willing to tell their story. The writer also followed-up
by telephone 10 to 14 days after the ED visit to gather further
information. Subsequently, the writer developed a number of
stories that reflected the experiences of the parents and
covered the spectrum of disease severity, ranging from the
child with very mild croup to the child with a more severe
form requiring admission to hospital (see Appendix).
The stories were evaluated for clinical accuracy and
appropriateness by two ED physicians and an ED nurse.
They were also reviewed by a convenience sample of individuals for interest, style and clarity. Subsequently, extensive revisions were made to the stories, and the
convenience sample of individuals provided additional
feedback. Once the stories were complete, a graphic designer
and illustrator worked together with the research team to
develop story booklets that presented the stories in a visually
attractive and engaging format. The booklets will be evaluated through a structured focus group involving eight to
10 parents. Final revisions will be made to the story booklets in response to the results of the focus group evaluation.
We will test the effectiveness of the final product
through a multicentre randomized trial. Consenting
parents/caregivers who meet predefined inclusion criteria
will be randomly allocated to receive the story booklet or a
standard ED information sheet. Parents will be contacted at
one and five days following their ED visit. Our primary outcome will be state anxiety of the parent/caregiver, which will
be measured using two validated instruments. Secondary
outcomes include parental satisfaction and comfort with
the ED visit and the information they receive; parental
knowledge; parental decisional regret; ongoing symptoms;
health care utilization patterns; and costs to the families
and the health care system. Ultimately, we would like to
test our hypothesis for different medical conditions and
using different forms of presentation, such as videocassettes,
Web sites and interactive computer games.
Will the union between the intuitive/narrative aspects
of human interactions and evidence-based medicine work?
Some might argue that this alliance goes against the principles of evidence-based medicine, which are so highly valued
and touted in today’s practice of medicine. Others, however,
note that the father of evidence-based medicine himself
claimed that effective medical care requires an integration
of sound evidence with fine clinical acumen (27,28).
Supporters of the narrative movement would argue that this
clinical acumen develops with an ability to see and understand the person behind the symptoms.
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For too long, a polarization has existed between the
evidence-based medicine purists and those who value
intuition as a key and important part of clinical practice (29).
Still, superb clinicians skillfully incorporate the features of
intuition in their practice (29). Our premise is that the combination of anecdote and evidence is complementary, not competitive. As our story unfolds, we will see how our hypothesis
measures up – using evidence-based methods, of course!
APPENDIX
Storytelling for croup: Excerpts from stories based on
experiences of parents attending the emergency
department for the treatment of a child with croup
Excerpts from Story 1 – Things We Take for Granted: A Mother’s
Account of Her Child’s Struggle with Croup
The nurse at the emergency department took us to an examination
room right away. Matthew, who was now feverish, struggled with
every breath in and coughed with every breath out. We had not waited
long before the doctor came in. She read the chart and asked me some
questions.
She listened to Matthew’s chest and announced, “Your son has a
severe case of croup.”
I was confused. First, our family doctor told me that Matthew just
had a cold. Then the doctor at the walk-in clinic said he had asthma.
Now I was being told that he had croup. Were these the same thing?
Why couldn’t anyone get it right? And how many more times was I
going to have to answer the same questions?
*****
The doctor explained that they would give Matthew a drug called
epinephrine through a mask, and that this would help him breathe.
She explained that the epinephrine helps right away but doesn’t last
very long, so they would also give him a steroid called dexamethasone. The steroid would help with the swelling in his throat and make
it easier for him to breathe, but it would take a few hours to work.
The nurse put the mask over Matthew’s nose and mouth. Matthew
became very upset. He was crying and trying to pull the mask off. I held
the mask in place for several minutes and Matthew’s breathing became
much easier. Then the nurse lifted the mask and quickly squirted the
dexamethasone syrup into his mouth with a syringe.
Excerpt from Story 2 – The Switcheroo
Though living in her mother’s basement suite with her 13-month-old
son, Kimi often called her grandmother to ask for help with medical
issues; she was the community’s traditional healer, after all. Kimi had
applied all the traditional medicine she could think of, but Uriel was
still coughing and fighting for breath. Tonight, nothing seemed to help.
Kimi often wished she were older; being a teenage mom, Kimi’s confidence in her skills as a parent was sometimes shaky. Kimi realized that
she had no choice but to take her son to the hospital; she would have
to wake her mother and ask her to drive them to town.
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