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The Use of Stories to Improve Diabetes Care for Palestinians and Israelis Norbert Goldfield, M.D. Executive Director Healing Across the Divides, Inc. This presentation is based on four ideas about health care: Health professionals treat patients, not diseases; The body has the last word;
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The Use of Stories to Improve Diabetes Care for Palestinians and IsraelisNorbert Goldfield, M.D.Executive DirectorHealing Across the Divides, Inc
This presentation is based on four ideas about health care: • Health professionals treat patients, not diseases; • The body has the last word; • All medical care flows through the relationship between health professional team and patient/family; • And the spoken language is the most important tool in medicine.
This presentation will provide • Introductory remarks especially information pertaining to respect and inequality • Background information on “stories” • A detailed listing of the Uses of Stories • A Suggested Quality Improvement Instrument for Israeli/Palestinian Diabetes Care - this needs to be “adjusted” for cultural differences.
The patient who believes that you understand will more often do what is prescribed and probably get better faster.
Diabetic stories of Palestinians are useful • For the patients themselves as health professionals repeat the stories back to the patients • For the organization from a planning and evaluation perspective • From a political/ policy point of view to influence an understanding of the impact of societal forces on diabetes control.
The notion of transforming oneself supposes the power to leave behind the life one has known – which means leaving behind the people one has known.
To be effective (defined as better control of diabetes), health professionals are in the “respect” business
Society shapes character in three ways so that people earn, or fail to arouse, respect.
The first way occurs through self – development, particularly through developing abilities and skills. The highly intelligent person who wastes a talent does not command respect; someone less gifted working to the limits of his or her ability does.
The second way lies in care of the self. In the ancient world, taking care of oneself meant learning how to regulate the body’s pleasures and pains; St. Augustine believed Man cares for himself by learning how to admit sin to God; Machiavelli thought taking care of oneself synonymous with protecting oneself, through arousing fear or awe in others.
The third way to earn respect it to give back to others. This is perhaps the most universal, timeless, and deepest source of esteem for one’s character.
Inequality plays a particular and decisive role in shaping these three character types. The unusual person who makes full use of his or her abilities can service as a social icon, justifying inadequate provision of resources or regard for people who are not developing as fully; the celebration of self sufficiency and fear of parasitism can serve as a way of denying the facts of social need; the compassion which lies behind the desire to give back can be deformed by social conditions into pity for the weak, pity which the receiver experiences as contempt.
Health professionals are immersed in stories. They hear stories from patients, tell them to other physicians, and recall them in quiet moments. Literary scholars, folklorists, and historians have long emphasized the importance of stories.
The physician-anthropologist Kleinman suggests that physicians need to move beyond “clinical interrogation” to listen attentively to their patients’ narratives of illness.
In the humanities and social sciences, a narrative has been defined as “someone telling someone else that something happened,” while a story is viewed as a high-order narrative that evokes human values and interpretation and is governed by specific conventions about the sequence of events.
Unconscious Beliefs Unconscious beliefs, ideas, premises (“fatal” or otherwise), among other determinants of behavior, are unarguably present in everyone. They are called “unconscious” because they cannot be brought to awareness by simple recall. These unconscious premises are always operating to a greater or lesser degree.
As a result we have to take for granted that part of the determinants of the patient’s behavior and speech (and of our own also) that is inaccessible to our certain knowledge; it is open only to speculation, which may be more or less accurate, depending on our experience, intuition, or insight.
What is the intent of the speaker, and how credible is what has been said?
Intention is defined here as a person’s reason or purpose with respect to speech, what the person means by a statement. It is the split that occurs in the “meaning” that creates the problem of intent,. The split is between what the person meant by what was said and what the words themselves mean.
It was not until I developed asthma that I realized that coughing may be the only symptom of bronchospasm at some periods of the illness. Repeatedly asking about wheezing will not only not reveal the diagnosis, it will also make the patient wonder whether you understand. The physician,who by continually asking questions, learns what things feel like to the patient will be better equipped to find out what actually is the matter and will confirm that he or she understands the patient. This comprehension will be genuine.
To know the intent of the speaker is, in the most simple terms, to understand. Understanding is a very complex and poorly delineated concept, but it is a vital component of an effective relation between doctor and patient.
In its broadest sense paralanguage can be defined as all nonverbal symbolic communication activity, including gestures and facial expressions.
ParalanguageNon word features of spoken language; • Pitch • Stress • Intonation • Pause • Speech rate • Volume • Accent • Voice quality
Stress Usual stress: She is going home. Contrastive stress: She is going home.
Volume Conventionally one associates volume with the loudness of someone’s voice. However, I might also have used the term intensity because this feature of paralanguage is not loudness alone ( the number of decibels) but includes the sense of force behind the words. Volume (or intensity) plays an important role in the perception of intonation.
It is an error to equate an observation with an interpretation because the hearer takes the meaning of the sounds to be what those sounds mean to the hearer, not necessarily what they mean to the speaker. This may be good enough for ordinary conversation – in fact it is, or there could be no ordinary conversation- but it is not sufficient for a physician who is trying to use what the patient says as a basis for action. A slight margin of error in the meaning of speech is no more tolerable than a margin of error in the meaning of heart sounds.
Using heart sounds as an example also emphasizes the fallacy of substituting interpretation for observation. In teaching physical diagnosis, we try to stress the importance of describing what the murmur sounds like – its location, place in the cardiac cycle, pitch duration, quality. The terms murmur of aortic insufficiency, mitral murmur, ejection murmur are not a substitute for such description. Someone hearing or reading these phrases does not know what the murmur sounded like. They know what the doctor thought; but what if the doctor was wrong?
In like manner it is not sufficient to write that “the knee demonstrated acute arthritis.” We want to know whether it was red, hot, tender, or swollen. And if so, how much of each. Arthritis is an interpretation. We want the original data, so that later findings from the same patient, or other patients, can be compared.
In the same way we expect trained listeners to remember language data (what the spoken words were and how they sounded) separate from any interpretation of meaning. With paralanguage, it means hearing fast speech, long pauses, high pitch, rising pitch, before interpreting these as “nervous,” “depressive,” “sad,” or “ironic.” This separation is fundamental for skillful use of language in medicine.
Learning to Interpret Pause Length in Conversation We would have little difficulty in agreeing that the following is a long pause ---not a short or a medium length pause. (Recite it with the pause length. Then try other pause lengths.)
Three Stages of Qualitative Methods Data Collection Observation Recordings and transcriptions of them Data Analysis Meaning Making
Clinical stories are used in many ways: to inform, to share, to inspire, to educate, and to persuade.
Patient stories have long been translated into the narrative structure of the case report for research purposes.
As clinical research has increasingly embraced quantitative tools to understand diseases and their treatment in populations, case reports have fallen into disrepute because of their potential for bias, which in this context can be defined as systematic discrepancies between different stories or between a story and other measures of exposure or disease.
In clinical practice, misunderstandings arise when the listener uses a story in a way that differs from the intent of the narrator, eg, if the physician does not prescribe the antibiotic that the patient desires.
Although a story may evoke general themes, no single story can be fully representative of a population. Responsible researchers and policy advocates may need to identify multiple stories to illustrate the main themes and important variations on those themes in the distribution of relevant stories. The sampling frame from which these stories are drawn can be made explicit to remind listeners that some stories express the most common themes in a population, while others represent dramatic but uncommon events.
“How do we distinguish among competing narratives when all are compelling?” Policy decisions should represent the concerns of the population affected by those decisions, not just those of the narrators of particularly inspiring or persuasive stories. Health policy, like medical practice, should be evidence-based, although this goal is all too rarely achieved.
Nevertheless, case reports are still useful to identify new diseases or new adverse effects of treatment, while systems that collect case reports about possible adverse effects of drugs or vaccines can identify recurring themes that generate research hypotheses.
Although physicians make confident medical decisions on the basis of such stories, these narratives are commonly viewed as too subjective to provide meaningful data for research. Over the last 20 years, however, researchers have used psychometric methods to convert these narratives of experience into reliable and valid ratings of symptoms, functional status, and quality of life. Such measures provide clinically useful diagnostic and prognostic information that complements the parameters measured by laboratory tests or imaging the studies.
For example, self reported physical limitations and angina frequency predict subsequent mortality and hospitalizations, while a self-rating of health status (using a single question with 5 response categories ranging from poor to excellent) can predict death and hospitalization in the following year.
Like quantitative research, skillful qualitative analysis is rigorous, systematic, and attentive to bias.
Diabetic stories of Palestinians are useful • For the patients themselves as health professionals repeat the stories back to the patients • For the organization from a planning and evaluation perspective • From a political/ policy point of view to influence an understanding of the impact of societal forces on diabetes control.
Clinical research uses stories to move from the specific toward the general, whereas health policy commonly uses stories to illustrate general issues through specific instances.
Health policy advocates use stories to persuade decision makers to adopt a certain course of action –indeed, some have suggested that “the plural of anecdote is policy.” – This is one of the objectives of Healing Across the Divides.
Stories about individuals illustrate the concerns of larger groups and the rationale or consequences of a policy option. This approach can increase understanding of complex issues, since psychological experiments have suggested that information is more easily processed in anecdotal form than as statistical abstraction.
Other psychologists have shown, however, that judgments based on anecdotal data are subject to specific cognitive biases. Thus, stories may be persuasive even if they contain misinformation or if they are misinterpreted by the listener.
Policy debates are commonly framed by stories that illustrate opposing sides of contentious issues, much as they are in legal proceedings. In a policy setting , the narrator may simultaneously intend to inform, inspire, and persuade the listener through a story.
