Papers Related to Narrative Medicine

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I N T R O D U C T I O N


Awakening to
Narrative Medicine

From Narrative Medicine by Lewis Mehl-Madrona

For more detail or to get the rest of the book, see

http://www.amazon.com/Narrative-Medicine-History-Healing-Process/dp/1591430658/ref=sr_1_1?s=books&ie=UTF8&qid=1350151623&sr=1-1&keywords=narrative+medicine


Diseases cannot be reduced to pathological facts, they constitute
other worlds.
Oliver Sacks1


Despite areas in which modern medicine shines, the prognosis for some
illnesses is little better today than it was one hundred years ago. The
incidence of some illnesses seems to be increasing. The U.S. Department
of Health and Human Services calculated 1028 patient-episodes of mental
illness per 100,000 people in 1955 and 3806 in the year 2000.2 New
illnesses such as AIDS, avian flu, fibromyalgia, and chronic fatigue syndrome
seem to appear as quickly as old ones are eradicated. Once we
have reached age five, we have no greater life expectancy today than we
did in 1905.3
This state of affairs is reflected in the relationships between doctors
and patients. Both are increasingly unhappy. Managed care in the
United States and time pressure in other countries has led to the ten-minute
office visit with the family doctor. Specialists are sometimes allotted
fifteen minutes. In the United States, people have little opportunity to
tell their stories to their doctors. Doctors have no venue for listening to
2 Introduction
patients. Taking a careful history is no longer cost effective. Television
commercials inform patients what drugs to request during their brief
visit with the doctor. Diagnoses are made in fifteen minutes or less after
a succession of rapid-fire, yes-or-no questions. Doctors increasingly rely
on answers to these questions to guide their decisions about what laboratory
tests to order, and then let the results of those tests make the diagnosis.
Illnesses that fall outside the realm of what the lab can diagnose
are relegated to the confusing, the psychosomatic, the ridiculous, and
the unimportant.
In a seeming rush to separate itself from culture and tradition, conventional
medicine has eliminated much of the art of healing—those
elements of doctoring that may be more important than the specific
medicines provided. In its rush toward technological solutions (part
of a broader social movement stretching across the twentieth century),
medicine has progressively diminished the importance of the doctor–
patient relationship, and of caring, compassion, and intent, in favor
of diagnostic imaging and technical procedures. Discarding these longstanding,
common aspects of healing practices has been to our detriment.
Many of these arts can only be found now in the practices of
the world’s indigenous cultures. Recovering these lost arts could infuse
medicine with renewed vitality and effectiveness. We need to hear new
and different voices. Narrative Medicine is about revising our concept
of medicine to enable the incorporation of these voices into modern
medicine.
Ethicist Daniel Callahan writes that medicine needs to abandon the
quest for immortality as its project and begin to consider quality of life.4
Immortality is unattainable; the quest for longevity is expensive and
draws from the resources available for the many to serve a privileged
few. When we focus upon quality of life, we find other compelling stories
that draw our attention away from conventional medicine as the
only option. My favorite competing stories come from North American
Native culture, since this is my heritage. Had I been born Chinese, however,
I would now be comparing and contrasting the traditional Chinese
story about health and healing with the conventional biomedical story.
Circumstances of birth and later life experiences led me to where I am
today. That is my context.
Awakening to Narrative Medicine 3
I was born in the Appalachian Mountains of southern Kentucky to
a family of mixed Scottish and Cherokee ancestry. We didn’t have much
in the way of medical care and largely relied on local healing practices
and folk medicine. I never met my father, though, through process of
elimination, I traced him through the U.S. Air Force to the Pine Ridge
area of South Dakota. He was apparently part French Canadian and
part Oglala. He and my mother met at a USO dance, but I think they
were both too proud and stubborn to get together once I was conceived.
My grandparents raised me while my mother worked her way through
college and began her teaching career. They raised me in a complex
mix of Cherokee heritage and modified Christianity—how modified I
only came to understand later when I studied what regular Christians
believed.
My mother eventually married a German farmer/milking parlor
serviceman, and we moved to southeastern Ohio where I finished high
school. I really didn’t have much appreciation for my heritage and culture,
except to know that the Cherokee identity—those principles and
stories instilled by my grandparents—saved my life in my difficult battles
with my step-father. I supposed I was the chosen one, since my halfbrothers
and sisters were not given these teachings.
Medical school made me aware of the value of my heritage. A
famous and intimidating professor stood ponderously before us on the
first day of pharmacology class. His glasses were perched on the end
of his nose. With virtual papal authority, he removed his lecture notes
from the inside pocket of his suit coat. He surveyed the room in pregnant
silence. “Boys,” he announced (he could not apparently acknowledge
the women in our class), “life is a relentless progression toward
death, disease, and decay. The job of the physician is to slow the rate of
decline.” I felt a lump in my throat. This was not how I wanted to see
myself or be seen. His teachings so conflicted with those of my grandparents
and great-grandmother that, by the next weekend, I had found
a Cherokee healer with whom to study.
This sparked a journey that has continued for over thirty years of
studying traditional healers and collecting stories about their work and
their patients. I have sat in ceremony with healers in such diverse places
as Arizona, New Mexico, Wisconsin, New York, Vermont, Hawaii,
4 Introduction
California, Canada, and even France, Germany, Austria, and the former
Yugoslavia. I have felt the power of the many prayers embedded
in sacred land in North America and thousand-year-old churches in
Europe.
I have also been immersed in conventional medicine for over thirty
years. I graduated from medical school in 1975. I completed residencies
in family medicine and in psychiatry at the University of Vermont. I
earned added qualifications in geriatrics. I completed a Ph.D. in clinical
psychology, though from a somewhat innovative graduate school that
emphasized cross-cultural psychology. I did a post-doctoral fellowship in
alcohol research at the U.C. Berkeley School of Public Health. I worked
for twenty-seven years in emergency medicine. In 2004, I stopped my
E.R. work, but I continue to practice mainstream family medicine and
psychiatry.
Throughout this time, I have tried to bridge cultures and to develop
an approach that will allow the patient and his or her family to be active
collaborators in the healing process, recognizing the wisdom of indigenous
cultures—that relationship matters, that people have to believe in
the treatment and the doctor, that the support of family and community
are necessary to make treatments work, and that far more than biology
and pharmacology determine the success or failure of each medical
encounter. I have traveled the world in search of healers. I have felt the
sadness when treatment fails and people die. I have seen the limitations
of narrow points of view on the part of many cultures.
I have traveled through a variety of United States institutions, longing
for that place where I could develop a truly integrated program that
was inclusive of the world’s cultures and especially of the Native cultures
of North America, since that is where we are located. For many reasons,
I couldn’t find that place. Two years ago, I moved from the University
of Arizona to the University of Saskatchewan in Canada, where I have
been working with aboriginal communities in rural and remote areas
and developing a training program in cross-cultural health and mental
health. Saskatchewan is the environment in which this book was written.
As I write this, the snow is blowing outside and the cars are hardly
moving in the -20°C weather. Nevertheless, sweatlodges are happening
Awakening to Narrative Medicine 5
this afternoon, and I will be going to one with two Cree healers from
Meadow Lake.
In my work, I have come to understand that integration, while desirable,
is not necessary. Respect and tolerance is what is actually required.
The world’s traditional healing methods will persist above ground or
underground, despite what mainstream people do. This has been the
experience of Native people in the United States and Canada.5 Cultures
persist and evolve despite what is done to destroy them. I discovered
the narrative philosophy and practice to be the best means of allowing
diverse stories to coexist and interact, so I present it as a framework in
this book for the restoration of traditional healing systems into a valid
position within world cultures.
I propose that medicine must reinvent itself to include the voices
and visions of indigenous peoples. Those of us within medicine must
discover how to get from where we are today to a paradigm (or a story)
that is more conducive to health and well-being. We need to think differently
about medicine, psychotherapy, and healing. What we have are
collections of stories that make sense to members of the cultures who
tell them. The world’s indigenous medical systems deserve appreciation
for their wisdom. These traditional methods of healing include North
American Native, traditional Chinese medicine, ayurveda from India,
and African medicine, to name but a few. They hold many useful stories
about health and disease, as valid in their own right as the stories told
by conventional medicine.
As doctors, we serve our patients best when we exercise judgment
and match stories to particular people, cultures, and circumstances to
achieve the best possible outcome. However, in our increasingly global,
modern culture, conventional medicine claims to be the truth, rather
than one of many truths. Studies of indigenous knowledge from around
the world teach us that many other valid ways of perceiving and learning
about the world exist, beyond the European-American scientific model.
When we reconsider our models of medicine and psychology from the
standpoint of other cultures, we begin to see that it also is an anthology
of stories, not necessarily superior to the world’s many other healing
traditions.
g
6 Introduction
In Coyote Medicine, I wrote about a traditional elder who told me that
health and disease evolved from the way we answered four simple questions:
Who are you? Where did you come from? Why are you here?
Where are you going? This wisdom is common in indigenous knowledge
systems about health and illness. Kim Anderson 6 wrote that her elders
asked four similar questions: Who are you? Where did you come from?
What are your responsibilities? Where are you going? These questions
are powerful because they force us to tell a story about ourselves. That
story becomes our identity. Medicine and psychology must also answer
these four questions. The answers become stories about the profession’s
identity.
We did not always have trauma surgery. This has emerged as a
modern story about how to save lives. We can say we prefer it for healing
damage caused by accidents and war, even though our preference
doesn’t mean that it always works, or that it can’t be augmented by
prayer, distant energy healing, or visualization. The worldviews behind
different stories about healing do not necessarily conflict with one
another. We can be multicultural, using several different anthologies
of belief. When we compare and contrast different knowledge systems,
we learn what we prefer and how practical a given approach is for our
particular context.
Within any healing art, whatever else we do, we treat by telling a
story. The term narrative medicine arises from the impossibility of separating
treatment from the stories told about the treatment, the audience
hearing the stories, and the context in which the stories are told. This is
as true for the conventional medical approach as it is for any other healing
modality. First we weave a time-sequenced narrative that includes
what we have been told about the course of the various symptoms. This
is called the “history of the illness.” We combine this with evidence from
laboratory and imaging studies to form an interpretive story that tells
the patient and family what caused the problem (from evil spirits to
mercury amalgams to viral infections). We use this story rhetorically to
position ourselves as trustworthy experts who can be believed. Then we
offer a prescription (do an exorcism, remove mercury fillings, prescribe
an antibiotic).
Awakening to Narrative Medicine 7
We build patient confidence through our use of all the tools language
and communication provide. We use what psychologist Michael
Bamberg of Clark University calls “small stories”7 (short vignettes that
barely qualify as tales in the classic sense) to position ourselves as caring,
compassionate, knowledgeable, and believable. To the extent we are
perceived this way, to the extent we are believed, we create an expected
outcome, and our treatment works. First and foremost, medical treatment
is a story that we instantiate upon others.
When our preferred story about sickness and cure differs too much
from those of our patients, their families, and their cultures, they may
choose their more familiar stories, perhaps searching for healers who are
more similar to them. How many patients come to us and then go home
to their local healers when our story emerges as unsatisfying? When people
don’t believe our stories, they won’t follow our treatments. Instead
of using terms like “noncompliance” or “lack of adherence,” we could
just say the story we told didn’t go over well. We weren’t sufficiently
convincing. Patients who do not follow our instructions are exercising
their functional autonomy to disagree with our story when it contradicts
their preferred stories. To our chagrin, they are free to do something different
than what we want them to do.
As much as medicine operates from stories about the world, patients
operate from stories about their encounters with doctors. If we listened
to all these stories and could hold them in our minds simultaneously,
we could grasp our culture’s concept of doctors’ roles, of all that people
think doctors are supposed to be and do. We would hear stories
that define good doctors, bad doctors, mean doctors, addicted doctors,
incompetent doctors, heroic doctors, caring doctors, and more.
An oft-repeated story is about the doctor who picks up a life-threatening
illness in its early stages, when it is still a confusing collection of
symptoms, permitting an early intervention that saves the patient’s life.
This doctor is a hero, which all doctors want to be. The flip version of
this story is about the doctor who misses the illness, allowing the
patient to die, and is then sued for malpractice. From these stories we
can see that many people hold doctors responsible for their health and
8 Introduction
well-being—blaming them if death occurs, charging them with preventing
death at all costs.*
We doctors have an especially rich investment in wanting to be the
main character in a medical hero tale, wrenching lives from the jaws of
death and making diagnoses from obscure facts that would stump even
Sherlock Holmes. We are drawn to medicine as a career to become this
hero. This story about who we are supposed to be—our medical identity—
torments and tortures us. What if we make a mistake and someone
dies? Then we fall from heroic grace and become the main character in a
tale of disgrace and failure. We may even turn to drugs, alcohol, or suicide.
We become tragic antiheroes in stories of lost potential and good
people gone bad. This fear keeps us awake at night, constantly studying
and worrying about things we might have missed and mistakes we may
have made. This is not necessarily bad, as taxing as it may be when driven
by fear. Nevertheless, the stories that we doctors tell ourselves about our
role are important determining factors in our behavior and approach
to treating patients. Our stories about ourselves interface with patients’
stories about us and merge into the unfolding treatment story, which the
patient may or may not accept. This story is what is efficacious, not the
various treatment modalities mentioned in the story. Healing rises or
falls on the quality of the story, not the modalities chosen.
*Paradoxically, it is not the incompetent or bad doctors who are usually sued, but the
doctors who are arrogant and don’t listen, whether they are correct or not. Medical
researcher Wendy Levinson recorded hundreds of conversations between physicians and
their patients.8 Half of the selected doctors had never been sued, while the other half
had been sued at least twice. On the basis of those conversations, she found clear differences
between the two groups. The surgeons who had not been sued spent three minutes
longer with their patients than those who had. They were more likely to make orienting
statements to prepare the patient for what to expect. They were more likely to encourage
further dialogue and to demonstrate active listening, and they were more likely to
laugh and be funny during the visit. They did not, however, appear to provide better
medical care. The difference was in how they talked to their patients. Next, psychologist
Nalini Ambady took these tape recordings, edited out the actual words, and presented the
garble, which preserved intonation, pitch, and rhythm, to lay people, who were still able
to predict which doctors had been sued and which hadn’t.9 These lay people knew absolutely
nothing about the physicians. They correctly realized that the doctors who sounded
dominant and arrogant were sued, and those who sounded concerned were not.
Awakening to Narrative Medicine 9
When we actually listen carefully to the amazing stories people tell
about how they got well from serious, life-threatening diseases, we realize
that no culture’s stories or belief system can explain everyone’s healing.
Sometimes healing defies a rational explanation. Healing stories are
often unique, lying outside the diagnostic and treatment stories of the
world’s medical systems. This observation puts us on a collision course
with rational positivism, the basis for declaring medicine scientific, based
upon discoverable facts and principles. Treatment becomes effective (or
more effective) through how it is presented as part of an over-arching
story inclusive of everything.
An example will further this discussion. A mother brought her fiveweek-
old daughter to the family medicine clinic for an urgent visit. The
mother began calling the clinic when her daughter was three weeks old,
and had been doing so with increasing urgency ever since. This was her
second child, who had been seen several times in the office and once in
pediatric emergency. When I saw this child, she was five weeks old and
had been without bowel movements for the past ten days. She was sleeping
poorly and was fussy and irritable all day. She vomited after nursing.
For the past thirty-six hours, she had had what is called projectile vomiting,
in which the vomit actually projects well beyond the baby.
When we examined the baby, her abdomen was mildly distended.
Poking and prodding upon it increased her irritability and fussiness.
Her cheeks, trunk, legs, and arms held a fine, faint rash that had been
present for the past week, not seeming to bother her. One eardrum was
mildly red.
Most of us with conventional medical training would approach this
child similarly. This is because we share a certain story about health and
disease. Without question, our approach does save lives, but it isn’t the
only possible approach, and not even the only one that can save lives,
or even always the best one. Within our story, we start by imagining the
worst. Our story focuses upon the mechanical things that can go wrong
and become life threatening. People come to us fearing the worst, and
are relieved and reassured when the worst does not come to pass.
The resident (physician in training) and I approached this baby contemplating
emergent conditions like pyloric stenosis (blockage of the
end of the stomach), volvulus (twisting of the intestine upon itself),
10 Introduction
intussusception, (telescoping of the intestine into itself), other causes
of intestinal blockage, Hirschsprung’s disease (a condition in which the
nerves that coordinate the movement of food through the intestines
are congenitally lacking), and congenital hypothyroidism, to name a
few possibilities. When an x-ray of the abdomen returned normal, we
ordered an ultrasound. We drew blood for thyroid studies, electrolytes,
and calcium, and obtained urine to rule out a bladder infection. What
were we to do when the ultrasound was normal? Luckily, when the
baby returned from the diagnostic imaging department, her abdominal
exam was also now normal. She slept through our poking on her belly.
Based upon the rash, pink ears, fussiness, and other symptoms, we felt
justified in making a diagnosis of “viral syndrome.”
Making a diagnosis is synonymous with constructing a story. It is an
act of making meaning from isolated observations. It is a social activity
in that everyone has to agree with the diagnosis (the story) for it to be a
good one. Part of selling a diagnostic story is telling it in such a way that
the involved lay people (family, patient, and friends) will believe it. Our
diagnostic stories are prescriptive in that they provide a rationale for
people to do what we tell them. When people don’t share our rationale,
they don’t follow “doctor’s orders.” We have to build a good story to
get people’s cooperation. This was as true in the days of leech bleeding
and bloodletting as it is today. When people reject our story, they seek
out others, such as those told by alternative medicine doctors, Chinese
medical practitioners, shamans, witchdoctors, faith healers, and more.
These people do just what we do—tell a story to build a rationale for a
different kind of treatment.
For our case with the five-week-old baby, once we leave the highly
correlated world of diagnostic imaging with structural gut abnormalities,
we enter a jungle of possibilities, including the realization that we
don’t actually have certainty about what to do. Some physicians would
interpret the pinkish-red ear as otitis media and give antibiotics, “just
in case,” which would probably be more treatment for the physician
than the child. Other physicians would offer Tylenol or Advil for symptom
relief, while each would build a story about what they thought was
wrong and how what was offered would treat the cause. Another practitioner
might try some tincture of belladonna.
Awakening to Narrative Medicine 11
The resident and I convinced ourselves that we could diagnose a viral
illness. We created a story of a viral process, only partially expressed
because of the conferred immunity from breastfeeding. We marshaled
our supporting evidence—pinkish-red ears, rash, fussiness, irritability.
We reasoned that the lack of stools, which is common among breastfed
babies, could relate to a higher-than-average metabolic rate due to the
virus. We decided to congratulate the mother on the power of her breast
milk to keep her baby relatively healthy in the face of a viral illness,
thereby making diagnosis more difficult for us. I prefer to call this an
explanatory story rather than fact, because it reminds me that there are
other ways to put together the same observations and even better stories
could emerge over time. The interaction and dialogue through which
shared stories are generated has only just begun.
In my experience, people who come to the doctor want more than
just a good explanation. They want more than reassurance. I wanted to
give this mother something, but something potentially empowering, not
requiring the continued surveillance of a medical professional. I made
the intuitive leap that this mother could handle a simple prescription
for chamomile and peppermint tea. I told her the story of Peter Rabbit
and how his mother had given him chamomile and peppermint tea to
calm his stomach and make him sleep after his antics in Mr. Macgregor’s
garden. “If it worked for Peter Rabbit, probably it will work for your
child,” I said, with some humor. She smiled and agreed with a nod.
Then we discussed how to prepare and administer the tea. I asked her
to return the next day in case my story wasn’t as good a map for this
territory as I had hoped.
When mother and baby returned the next day for follow-up, mom
stated with pleasure that the tea “had worked.” The baby’s bowels
moved, the vomiting stopped, the child slept for six hours straight, and
the irritation and fussiness resolved. Was it the tea or the story in which
the tea was embedded? Add to this brew the mother’s sense of relief
when she was reassured that nothing terrible was wrong with her baby,
possibly related to my ability to make rapport and tell convincing stories
or to the fact that the virus had already run its course. Did we heal the
mother sufficiently for her to heal her child? We don’t know; but to the
chagrin of evidence-based medicine advocates, we know that the tea
12 Introduction
cannot be considered apart from the story containing everything that
happened.
Stories like this illustrate why I often place “heal” in quotation
marks, to call attention to the possibility, as suspected by many aboriginal
healers, that healing arises mysteriously through dialogue—in this
case, our interaction of mother, baby, resident, nurses, imaging technicians,
phlebotomists, receptionists, and me. Awareness of the storied
nature of medical practice allows us to bring back the importance of
relationship to healing, a story often told by indigenous healers.10 The
power of reassurance and having tea to serve as a vehicle for the expression
of maternal love and caring may have been sufficient to initiate a
healing dialogue between mother and baby after they left the office.
Would you be surprised to learn, as I did when they returned, that
this woman’s husband had lost his job when the child was two weeks
old, multiplying the stress within the family? Mom’s stomach was in
knots. This new information prompted me to further congratulate the
woman for managing as well as she had in the face of adversity. At every
visit, we open new drawers and cabinets and doors within the person’s
house, always learning something new. We can now imagine a richer
story in which the infant experienced the increasingly stressful ambience
of the family and had physiological consequences. We could invoke the
extensive literature on the gut–brain connection to help us explain this.
However, one of the advantages of a “narrative approach” over logical
positivism is that we can accept this narrative on its own merits. We can
declare its validity without reference to a normative sample. We don’t
have to extract any principles about the correlation of paternal job loss
and infant vomiting. People are richer and more idiosyncratic than one
simple correlation. Many different stories could be told about paternal
job loss at two weeks of age. Now we are more aligned with aboriginal
knowledge and practice, in which we can entertain with interest a connection
between life events and the events experienced without having to
explain, generalize, or interpret. We don’t have to find the “right” story
to explain what happened. It is enough simply to add this story to an
archive of stories, which we can then explore more holistically—without
having to dissect the underlying elements of the stories and make specific
correlations.
Awakening to Narrative Medicine 13
Consistent with indigenous approaches, a narrative approach allows
us to accept the validity of people’s stories without reference to correlations
or large population studies. The underlying principle is the connectedness
of all things, but this manifests in different ways in different
families and cultures. A narrative approach does not seek to make a
specific correlation of family stress with infantile vomiting. If the next
ten cases of infantile vomiting do not resemble this story in the slightest,
that does not invalidate the story. It can and does stand alone. People
and their situations, families, cultures, and biological responses are all
different.
There is no doubt that experimental science and observational epidemiology
are useful. Science can tell us amazing stories about the world.
My current favorite scientific story comes from Wade Davis’s book,
The Clouded Leopard.11 Davis tells us a story about the behavior of the
giant lily from the Amazon, which opens its white blossoms briefly at
dusk. The flower buds rise above the surface of the water and rapidly
open, releasing an intense fragrance that has been building in strength
all afternoon. The metabolic processes that generate the odor raise the
temperature of the central cavity of the blossom by about 20°F (11°C)
over the outside temperature. The color, smell, and heat attract a swarm
of beetles, which converge on the center of the flower. As night falls
and temperatures drop, the flower closes, trapping the beetles inside the
carpel of the flower with a single night’s supply of starch and sugar. The
next day, just before dusk, the anthers (male parts) of the flower release
pollen and the sticky beetles are allowed to go. In their mad dash to find
more food, they are covered with pollen, which they carry to the stigma
of another flower, thus accomplishing pollination.
This description is scientific, but not explanatory in the way of most
diagnosis–treatment stories, which rely on a cause-and-effect understanding
of how things work. The story of the giant lily is more like the
stories of spontaneous healings that inspire awe and wonder, making us
think, “Wow, that’s amazing. How in the world did that happen?” We
realize that healing is a great mystery, perhaps even defiant of explanation.
This is where myths, legends, and spiritual narrative enter the
picture.
The correlations that have been made between abdominal x-ray
14 Introduction
patterns and anatomical conditions are helpful. From the recording of
trial and error experience since the dawn of x-ray photographs, we have
good ideas about the signs that indicate an actual anatomical diagnosis
of volvulus, intussusception, and malrotation. We have developed similar
correlative understandings for ultrasound patterns and anatomical
conditions of the abdomen. We know from collecting data that these
conditions are often fatal without surgical intervention. Here is where
population studies shine. We have developed risk–benefit analyses to
convince ourselves (easily) that surgery is better than near certain death.
So, the recording of observational data is useful.
What we forget is that our observations and correlations can be
put together in myriad ways when it comes to developing a larger story
about what’s going on. Have we let ourselves become arrogant based
upon our successes with the life-threatening structural diseases—intussusception,
volvulus, and the like? We generalize that arrogance to myriad
other areas where our performance is not so great—cardiovascular
diseases, schizophrenia, diabetes, and unexplained vomiting of children.
In keeping with that, the improvement in lifespan that has occurred over
the last one hundred years has been largely the result of changes in the
treatment of childhood diseases.
Our Western medical story is not necessarily privileged over the traditional
Chinese story, the ayurvedic story, or the spiritual healing story.
Indigenous cultures have also been recording observational data in the
form of stories for as long as humans have had language, and are emphasizing
that their stories are as valid as the European scientific story. For
example, Edward Jenner is credited with discovering that cowpox infections
conferred immunity against smallpox infections. In fact, he learned
this as a story told by milkmaids. They knew that they couldn’t get the
smallpox once they’d had the cowpox. Jenner merely publicized what
the dairy community already knew. He took the idea further by intentionally
inoculating people so that they would come down with cowpox
to prevent smallpox, but the idea came from stories already circulating
in his environment. He just expanded it to large populations outside the
dairy world. He built upon an indigenous, local story.
Similarly, many of the indigenous people of Thailand and surrounding
areas survived the tsunami that hit in 2004 because of their stories.
Awakening to Narrative Medicine 15
A number of stories informed the people to run for the hills when the
water receded and fish were stranded on the newly uncovered beach.
Anthropologist Kathryn Coe of the University of Arizona tells a similar
story about an event that occurred in Africa at the turn of the century.12
The native people of an equatorial lake had stories that informed them
never to build houses below a certain altitude above the lake. Though no
scientific justification was provided, they followed these stories, unlike
the Europeans, who thought such ideas were poppycock. When a large
carbon monoxide bubble rose out of the lake, as it did every several hundred
years, the Europeans were killed, while the indigenous people lived
high enough from the surface of the lake to survive. For centuries, stories
have contained perspicacious observational wisdom. These stories
don’t provide what biomedicine would consider a satisfactory scientific
explanation, but neither did the milkmaids’ cowpox story. It just told
how things worked.
Most disturbing is the tendency of physicians to tell a story that
dictates a specific ending, like when we tell a person when she will die.
We get numbers from the median or mode of a population of people
with cancer, for example, and then tell everyone that the mean is how
long each individual will live. Gordis describes the conventional wisdom
well: “A patient asks his physician, ‘How long do I have to live, doctor?’
and the doctor replies, ‘Six months to a year.’”13 The fallacy of this
approach lies in the inability of population studies to predict where an
individual person will fall on an actual survival curve, which is generally
bell shaped. For example, in one case conference I attended at the
University of Saskatchewan, a researcher presented a study from the
provincial SaskHealth database showing that the median survival for
women with metastatic breast cancer was 3.4 years. In almost a footnote,
he mentioned that he discarded 2.5 percent of women from the
analysis because they were outliers, living an average of forty-three years
after diagnosis.14 In actuality, only a small proportion lived 3.4 years.
That number was just an average.
We use survival curves and statistics to talk about disease as if it were
independent of the people who have it and their stories. This so-called
“natural history approach” is grounded in the idea that the patient and
her family and culture have no relevance to survival. It usually ignores
16 Introduction
the stories of the 3 percent at the far end of the survival curve who
live much longer than the mean. Those of us who record and save the
stories of people like this—those who have supposedly lethal diseases
but outlive their doctors and their doctors’ predictions—fear that telling
patients how long they should expect to live sets up a self-fulfilling
prophecy. Indeed, psychologist and immunologist Alastair Cunningham
of the University of Toronto showed that the best predictor of how long
a patient lives in the presence of metastatic cancer is how long the person
thinks they will live.15 Similarly, in one of my studies the best predictor
of response to an AIDS treatment that was later shown to be ineffective
was how strongly the patient believed that it would work.16 I observed
similar findings with a treatment for autism that was later shown to
be biologically inactive—the best predictor of success was the parents’
enthusiasm for the treatment.17
Here is where the conventional medical story about the “natural
history” of a disease—which, according to this thinking, is supposed
to progress in an orderly fashion regardless of the acts of the person
who has the disease—diverges from indigenous stories of healing. These
stories accept that healing is always possible, though not producible on
command. In some contexts, like vodou (voodoo) or boning practices
from Africa, telling people they are going to die is as good as killing
them.
Some children spontaneously resolve malrotations, volvulus conditions,
or intussusceptions without surgery. We can’t explain this. Our
medical story relegates these events to the realm of spontaneous remissions.
Other cultures tell stories that attribute these healings to acts of
God, Divine Grace, or the power of prayer. We actually have no knowledge
about how spontaneous the healings were, just that they happened
without our providing any mechanical treatment (for example, drugs
or surgery). Unlike the stories of healing told by indigenous cultures,
the medical stories preferred by mainstream culture generally exclude
actions by supernatural beings (God, angels, spirits). I prefer to call such
healing stories mysteries instead of spontaneous remissions. It seems
better to admit our uncertainty than to use empty words that make us
sound more knowledgeable than we are, at least to the uninformed.
My accounts of so-called miraculous cures have generated criticism
Awakening to Narrative Medicine 17
in academic and medical circles. In academic circles, cures, healing,
spirits, medicine powers—any of these terms can bring down rain upon
the head of one who uses them. Anthropologist William Lyon of the
University of Missouri at Kansas City has agreed with me that today’s
academic standards automatically question the scholarship (or sanity) of
anyone who believes in spirits or that people can cultivate relationships
of power with them. Lyon is one of the few courageous anthropologists
who has written about his actual observations of medicine ceremonies,
and he has personally experienced some of the effects of academic skepticism
and ridicule.* Nevertheless, he has continued to report what he
saw and experienced in healing ceremonies, as I too have done.
My vision in approaching this work is similar to what Black Elk
is reported to have said of his biographer, Neihardt. Just as Black Elk
said that he believed Neihardt had been sent “to save his [Black Elk’s’]
great vision” and that he (Black Elk) had been waiting for him to arrive,
healing elders have told me that they expect me to share their wisdom
with mainstream culture. Black Elk said, “What I know was given to me
for men and it is true and it is beautiful. Soon I shall be under the grass
and it will be lost. You were sent to save it, and you must come back so
that I can teach you.”18 My goal, like Neihardt’s, and William Lyon’s, is
to save and promote the visions and wisdom of aboriginal cultures for
health and healing—because we desperately need this perspective and
their stories.
It’s not too late to acknowledge the merit of indigenous perspectives
for the modern world. For example, the idea that each person is
the sum of all the stories that have ever been (or ever will be) told about
him and that the idea that our identity is formed from telling ourselves
these stories leads us to realize that each person is unique and must be
approached individually to discover how they will heal. No two people
*I had the privilege of reading Lyon’s amazing book on medicine powers and spirits that
his academic publisher actually dropped, presumably for reasons related to Lyon’s acceptance
of medicine powers and their descriptions by traditional informants as real. Since he
didn’t interpret these stories as fictional, he couldn’t be acceptable to an academic press. I
look forward to the day when this important work becomes publicly accessible. For now,
throughout the book, references to his work will be from my personal correspondence
with him and from his unpublished manuscript.
18 Introduction
with the same diagnosis are narratively alike. All the stories are different.
Treatments can’t work if the stories we live have no place for healing.
We physicians would serve our patients better if we could learn how
to listen to people tell their own valid renditions of their realities and the
worlds in which they dwell. If we wish for people to “comply” with our
medical prescriptive stories, what we say must resonate with the stories
of the health decision makers within families (often wise grandmothers
in aboriginal or Hispanic culture) and that family’s and culture’s
stories or wisdom about how to live and what is meaningful or valid.
(For example, taking medications that reduce sexual potency may not be
compatible with the culture’s stories about what it means to be a man.)
If we can respect other stories or worldviews that differ from our own
and entertain the possibility that these stories and views might work as
well as (or even better than) our own, we will be more capable of and
open to cross-cultural collaboration. We might begin to “speak so that
we can listen” instead of lecturing the world from our position of superiority.
We might be better able to form collaborative partnerships to
reach desired goals.
Our world needs more multicultural, collaborative partnerships
with its diverse cultures. We doctors need to practice in a style that is
respectful of the world’s many different stories about health, sickness,
meaning, purpose, and life. A narrative approach to medicine can help
us, as can an understanding of collaborative language and learning systems.
In listening to others’ perspectives with equal respect as to our
own, we develop shared language and eventually shared stories about
the meaning and purpose that we forge in common. When we work
from shared stories that respect all involved families and cultures, we
eliminate patient noncompliance since we all work from the same shared
map showing how to get from a state of sickness to greater health.
We also need cross-cultural research programs, which by nature will
require us to collect stories. They will require collaborative partnerships
with the knowledge holders of other traditions and the development of
collaborative language systems that will help us understand each other.
They will require our listening very carefully to each other and learning
how to translate our stories into each other’s frameworks (the nascent
field of knowledge translation). We might end up comparing the outAwakening
to Narrative Medicine 19
comes from the imposition of our biomedical paradigm (story) with traditional
healing used within its own community of origin. We might
learn that people’s historical, local practices are more effective, within
those communities, than externally imposed biomedical approaches. We
might even learn that our expensive biomedical approaches to health
and disease work, but can be equivalent to using a Gauguin painting to
kindle a campfire.
I conclude with the story of a Latina woman I interviewed during a
workshop in Los Angeles. In that sun drenched environment, Alma
presented a story to me that was logical, comprehensible, and beyond
my medical understanding. She had healed from a relatively incurable
illness. Alma clearly shows us how medical expectations can influence
outcome and presents an example of resistance to being “programmed”
to die on command. She shares with us the amazing healing power of
love. She shows us a very unique path to healing that can inspire us, but
is not a formula for getting well. It was just her path.
Alma had previously been diagnosed with Wegener’s granulomatosis.
Her symptoms had been severe. By the time of my interview, she was
essentially well. When I asked her to what she attributed her healing, she
said, “Love.”
“How so?” I asked.
“I began by doing everything the doctors told me to do,” she said,
“but then I realized that they were looking at me as if I were dead. They
were already at my funeral. I didn’t like that. I didn’t like feeling like a
corpse when I walked into the office. That’s when I decided to go to the
spiritual healer.”
Alma then described her meetings with the healer who extracted a
curse from her, massaged her, rubbed herbs over her body, prayed to the
saints and the spirits, and conducted various ceremonies for her. At the
same time, she went to the curanderos, traditional Latin-American folk
healers, for herbs. Over time, she said, she learned to love herself with a
fraction of the love that the angels had for her. She credited that as starting
her improvement.
Next Alma met a man who loved her almost unconditionally. That
feeling of being loved brought up memories and pain from previous bad
20 Introduction
relationships. To his credit, she said, this man stayed with her while she
worked that out. She almost left him many times, but he insisted she
stay with him while she went through her crises. “He told me I could
only leave him when I was feeling good. That really helped and we’re
still together.”
“What do you think of the doctors now?” I asked. We were sitting
on a deck in Santa Monica, overlooking the Pacific Ocean, its blue
deeper than the sky. A gentle wind passed over us, carrying the smell of
the sea. Occasional clouds cast shadows upon the water.
“They’re nice young people, but they’re misguided.” The wind picked
up, swaying the tree branches. Cars and trucks clogged the Pacific Coast
Highway below us. “They don’t know God or Spirit or Love or plant
medicine. They don’t know how our people have healed for centuries. I
guess you can’t expect much of them, though if you want to die, they’ll
hold your hand and encourage you to do so.” Surfers came and went on
the shore.
“What advice do you have for others who are ill?”
“That’s easy,” she laughed. “Find people who can have the faith and
hope for you that you don’t have. It’s contagious. Eventually you will
feel it, too. And when you find love, for yourself and from anyone else,
sink your teeth into it and hold on for dear life. Don’t give up.”
This story is valid in its own right. It doesn’t have to lead to a study,
to any particular prescriptive practice, or to any interpretation, except to
say, “Wow, that’s really something. I’m really happy to hear that.”
That’s what we will explore in the remainder of this book—a medicine
based upon stories as a means to understanding and healing. I
hope to further our sense of story as an intersection with the world’s
indigenous cultures, a bridge to connect us with people from around the
world. We will explore the stories that emerge in dialogue with others,
with nature, with God and the spirits, and with illnesses. These stories
give us clues about healing—how it works, how to do it. They show us
our connectedness to one another and teach us about the indigenous
principle that we are never separate from our surroundings or from our
culture.