Patient participation by sharing illness narratives

Developments in modern medicine such as the advent of imaging technologies, the human genome and biotechnology mean that diseases can be predicted, detected, treated and managed with greater effect than in any historical period.

The doctor–patient relationship has been and remains a keystone of care: the medium in which data are gathered, diagnoses and plans are made, compliance is accomplished, and healing, patient activation, and support are provided.

Medicine practiced with narrative competence, called narrative medicine, is proposed as a model for humane and effective medical practice.

We are the stories we tell ourselves. In this universe and this existence, where we live with this duality of whether we exist or not and who we are, the stories we tell ourselves are the stories that define the potentialities of our existence. So that’s as wide as we look at stories. We are surrounded by stories. Every invention grew out of a story. And even the stories of the stories grew out of stories. In a similar way our bodies are our stories.

Oliver Sacks wrote in his book ‘An Anthropologist on Mars’:

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

Narrative medicine is defined as a patient-centered form of medical practice. The importance of the narrative in medical practice is well recognized [1]. In the context of education, Greenhalgh and Hurwitz believe that narratives should be studied because they are memorable, grounded in experience and enforce reflection. Within a diagnostic encounter they believe that narratives foster empathy and understanding, allow meaning to be constructed around illness and may supply useful analytical clues in relation to an illness. Patient education originally evolved for use in acute illness populations and consisted mainly of medical information about the disease itself [2] but the use of narrative accounts about actually living with an illness may be more useful for creating educational materials for patients with chronic conditions.

Know your listener. How do you begin to think of a story? How do you excavate ideas? It starts by knowing who your listener is. There is a reciprocal relationship between listening and telling. What that means is that whatever I’m saying to a group or through a blog is shaped by whoever is listening. In a one-on-one situation it’s easier to understand. You have someone in front of you, but others may walk into the room and those people begin to listen to what you’re saying and their behavior affects how you tell your story. It can be as simple as body language. That’s the first thing we look at: How can we create an environment in which it’s possible to tell stories and make listening easier for an audience? We think of ourselves as creating spaces that remove “obstacles to listening.”

Know how to tell your story. The way I tell a story shapes the way people listen. If I’m shaping the way you listen to me, my primary goal is to connect with you. It’s not to have the perfect story; it’s to connect with the listener. In order to do that, a story should always answer the question “What happened?”. We focus on the facts that are imperative to the story and we follow the five senses. We go into those kinds of details because descriptive cues cause the brain to respond. Stories engage our brains in a different way.

As Jerome Deroy, CEO of Narativ says:

If you can tell a concrete story of what actually happened and remove the interpretations, judgments and opinions, you leave room for dialogue.

Rita Charon (2006) used the term narrative medicine ‘to mean medicine practiced with these narrative skills of recognizing, absorbing, interpreting and being moved by the stories of illness. As a new frame for healthcare narrative medicine offers the hope that our healthcare system can become more effective than it has been in treating disease by recognizing and respecting those afflicted with it and in nourishing those who care for the sick.’

Sick people need physicians who can understand their diseases, treat their medical problems and accompany them through their illnesses. Despite medicine’s recent dazzling technological progress in diagnosing and treating illnesses, physicians sometimes lack the capacities to recognize the plights of their patients, to extend empathy toward those who suffer and to join honestly and courageously with patients in their illnesses.[3,4] A scientifically competent medicine alone cannot help a patient grapple with the loss of health or find meaning in suffering. Along with scientific ability, physicians need the ability to listen to the narratives of the patient, grasp and honor their meanings, and be moved to act on the patient’s behalf. This is narrative competence, that is, the competence that human beings use to absorb, interpret, and respond to stories. [5] Such a medicine can be called narrative medicine.[6] The patient narrative does not necessarily clarify what the most important concerns of the patient are. The narrative approach requires active listening for the — sometimes hidden — meaning and significance of the particulars in the patient story.

The first approach in Narrative Medicine is to recognize that there are different beliefs between medical professionals and patients. Patients’ illness narratives reflected four common themes related to patient participation. Two themes described patients’ perspectives of their illness. These were: (a) how central the illness is in the patient’s overall life story, and (b) the perceived degree to which the illness plotline can change for the better. Two additional themes described aspects of actions pursued in the context of patients’ illness narratives: (a) the degree of illness-related activity that a patient engages in, and (b) the role of partnership with the patient’s physician in health decision making and illness management. [7] Listening is a therapeutic intervention in its own right, but regrettably a lot of the physicians are not always so good at it.

On March 10 we ran a pilot with six chronicly ill patients. Three men and three women shared their stories about their illness and its meaning in their lives. We want to thank Lucien Engelen, director of Radboud REshape Center for Innovation for his hospitality and allowing us to use his meeting space.

A special ‘Thank you’ to Jane Nash, Dan Milne and Jerome Deroy of Narativ for allowing to learn, to tell, to listen, to share and to teach people this wonderful method.

[1] Greenhalgh T, Hurwitz B, editors. In: Narrative based medicine. London: BMJ Books; 1998.

[2] Visser A. Education and counselling approaches in chronic conditions. Patient Educ Couns 2000;41:241–2. [

3] Morris DM. Illness and Culture in the Postmodern Age. Berkeley: University of California Press; 1998.

[4] Konner M. Medicine at the Crossroads: The Crisis in Health Care. New York, NY: Pantheon Books; 1993.

[5] Charon R. The narrative road to empathy. In: Spiro H, Curnen MGM, Peschel E, St. James D, eds. Empathy and the Practice of Medicine: Beyond Pills and the Scalpel. New Haven, Conn: Yale University Press; 1993:147-159.

[6] Charon R. Narrative medicine: form, function, and ethics. Ann Intern Med.2001;134:83-87.

[7] Haidet P, Kroll, T and Sharf B.F. The complexity of patient participation: Lessons learned from patients’ illness narratives ; 2006 Sep;62(3):323-9.

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