What is narrative-based medicine?

Abstract

Objective

To raise awareness of narrative-based medicine (NBM) as a valuable approach to the consultation, which, if practised more widely by GPs, would convey considerable benefits to both patients and physicians.

Sources of information

Principally, the perspectives of 2 of NBM’s key proponents, Rita Charon and John Launer.

Main message

This first in a series of 3 articles outlines what NBM is and its benefits. In holding the patient story as central, NBM shifts the doctor’s focus from the need to problem solve to the need to understand. As a result, the patient-doctor relationship is strengthened and the patient’s needs and concerns are addressed more effectively and with improved health outcomes.

Conclusion

The healing power of narrative is repeatedly attested to but the scientific evidence is sparse. If NBM is to be incorporated more broadly in clinical practice, more research is needed to better define NBM’s role, understand the specific skills required for practice, and determine NBM’s outcomes with respect to illness and disease.

Wouldn’t you want someone to tell your story? Ultimately, it’s the best proof there is that we mattered. And what else is life from the time you were born but a struggle to matter, at least to someone?

Elliot Perlman¹

Stories are our life’s blood. We like to listen to stories, and it is through stories that we make sense of the world,^2,3 that identity is shaped,^4–6 and that we attempt to communicate what matters to us.^2,3 This is well recognized by psychology, the social sciences, and the humanities, where narrative ideas originated.^7–10 Narrative-based medicine (NBM) is the application of narrative ideas to the practice of medicine. Like patient-centred care, it came into being in reaction to the inadequacies of the biomedical model. Narrative-based medicine emerged from a coming together of disparate schools of thought: the medical humanities (history, philosophy, ethics, literature, literary theory, the arts, and cultural studies); primary care and patient-centred care; biopsychosocial medicine and holistic care; and psychoanalysis and the work of Michael Balint.^11–14

There is no accepted definition of NBM.¹⁵ Charon says that it is medicine practised with narrative competence “to recognize, absorb, interpret, and be moved by the stories of illness.”¹⁶ The definition arrived at in 2014 by a committee of international experts was that NBM is “a fundamental tool to acquire, comprehend and integrate the different points of view of all the participants having a role in the illness experience.”¹⁷ The lack of a clear definition poses a problem when trying to define the skill set for practising NBM and, in turn, reducing the resistance and scepticism that surrounds NBM.⁶

The fundamental tenet of NBM is that meaning is derived from the stories that we tell.² Many stories are told in medicine. Patients tell a story about a symptom or concern, its context, how it is affecting them, and why they came to the doctor. This is a story with infinite variations in content, the person telling it, the language used, and how it is told. It reflects the uniqueness of the patient and his or her experience.¹¹ Doctors also bring their own stories to the consultation. The doctor’s understanding of what is occurring for the patient, the diagnosis that is formulated, and ideas about causation and management form a story in their own right, which has to be communicated to the patient.¹⁸ The way in which this is conducted reflects the doctor’s personality, experiences, and practice.

Sources of information

Principally, this article draws on the perspectives of 2 of NBM’s key proponents, Rita Charon and John Launer.

Main message

When we cannot find a way of telling our story, our story tells us—we dream these stories, we develop symptoms, or we find ourselves acting in ways we don’t understand.

Stephen Grosz¹⁹

Understanding the illness experience is important in medicine. Trauma studies inform us of the importance of the survivor of trauma telling his or her story and of the listener acknowledging that suffering as real.^11,20 Narrative-based medicine, at its very least, gives permission to patients to unburden themselves, and attentive listening is intrinsically therapeutic.^9,21 In palliative care, when medical science has nothing more to offer, it is comfort and understanding that patients seek to carry them through until their last breath.^21,22 Patient narratives repeatedly attest to the importance of these things, as do the narratives of doctors who have experienced illness.^21,23–25

Medical students and GP trainees are taught the importance of good communication skills, patient-centredness, and the biopsychosocial and “holistic” paradigms, and about addressing the patient’s ideas, concerns, and expectations. Despite this, patients frequently complain that doctors do not listen, they appear disinterested, they interrupt, they make assumptions, and they do not address patient concerns.²⁶ Doctors defend themselves by complaining about difficult patients, the pressures of patient numbers and time, and the travesties of consumer medicine.²⁶ Nevertheless, from a patient perspective, doctors have lost sight of what matters.²⁶ Narrative-based medicine seeks to redress that imbalance.²⁷

The 4 divides.

Rita Charon,¹¹ a proponent of narrative, says that while doctors might be knowledgeable about disease, they do not appreciate adequately that illness changes everything for the patient. According to Charon, there are “four divides”^11,28 that contribute to the disconnection that might occur between doctor and patient.

The relation to mortality: Illness is an unexpected event that elicits many emotions, especially the fear of death. Patient attitudes to illness and mortality are coloured by previous experiences, while doctors, because of their training, have a different perspective.

The context of illness: Doctors quite naturally view illness as a biological phenomenon requiring medical intervention. Patients view illness within the framework of their entire lives.

Beliefs about disease causality: Patients do not have the medical knowledge of doctors and so their notions of illness and its causes can differ widely. When ideas of causality are conflicting, care is compromised.

Shame, blame, and fear: Patients are embarrassed revealing intimate aspects of themselves. Illness makes them vulnerable and fearful. They might blame themselves because illness is perceived as having been caused by past misdemeanours, and if the outcomes are not favourable, they might blame the doctor. Doctors equally might be embarrassed to ask personal questions. They blame patients for being demanding or for not looking after themselves, and they fear being sued. These emotions, on both sides, affect the illness experience considerably. Unless they are addressed, they might cause such suffering that they divide doctor and patient irrevocably.

For Charon, therefore, listening closely and acknowledging and exploring the 4 divides are part of understanding the illness experience and what it means for the patient.

Charon compares the patient’s story to literary texts.¹¹ As with such texts, some patient stories are straightforward and easily understood. Others, however, are more complex or perhaps told in a particular way that requires more background information, further exploration, and someone more expert to assist with the interpretation. Reading of literary texts stimulates the imagination—it opens up the mind to different ideas and varied possibilities—and text analysis promotes a deeper understanding of the narrative.^11,16 By extending these principles of literary analysis to the patient narrative, much more can be learned and understood about the patient. However, imagination²⁹ to see things from the patient perspective and to consider different viewpoints is not the only thing that is gained. By reflecting on the encounter, the doctor invariably reflects on the self and his or her own role, thereby gaining insight into the self and his or her own effect on the interaction.^11,12

The 7 Cs.

Language and discourse analysis is similarly useful in providing insights into patient narratives,³⁰ promoting active listening, and improving understanding.⁶ Language is fundamental to any conversation. Launer’s focus is on the use of language, meanings both explicit and implicit, and he regards the consultation as a “conversation.”^31,32 By means of the conversation, a shared understanding is created—a “new story,” as it were. For the doctor, this understanding is a closer approximation of the patient’s reality. For the patient it is the understanding of what is important as regards their health and what they need to do. Without it, adherence cannot be assured. With it, adherence is enhanced. As Launer suggests, we must see “reality more like a tapestry of language that is continually being woven ... we construct our view of reality by telling stories.”³¹

To reach a shared understanding, good communication skills on the doctor’s part are vital. Launer identifies 7 principles—the 7 Cs^8,31,32—for his “conversations inviting change,” which underpin his approach to NBM.

Conversations: The doctor allows the patient to express his or her story adequately and in his or her own words, while at the same time exploring connections, differences, new options, and new possibilities, probing and guiding the conversation in a deliberate way that facilitates and enhances understanding without being controlling or interfering (Box 1).⁸ Understanding is created, for doctor and patient, by virtue of the conversation. The management plan is something that is agreed on, rather than something imposed. Such conversations flow naturally and might continue from one consultation to the next. Patients are “invited” to see change as a realistic possibility.

Box 1. Questions and prompts useful in narrative-based medicine.

Exploratory questions and prompts:

• Tell me about it

• Tell me more

• Is there something else?

• Is there something that you are worried about?

• What is worrying you most?

• Has this ever happened before?

• What else was happening at that time?

• What do you think about …?

• What do others think about …?

• How do you feel [or react] when ...?

• What does this mean for you?

• What do you think might be causing …?

• How would you describe ...?

• How do you explain ...?

Questions and prompts inviting change:

• How else might you explain …?

• Are there any other possibilities?

• Suppose ...

• What would happen if ...?

• If you had a magic wand, what would you do?

• What needs to happen for the situation to change?

• If the situation did change, what would happen then?

• What will happen if nothing changes?

Adapted from Launer.⁸

Curiosity: This is not about prying but about having a genuine interest in patients and wanting to know more about them and their circumstances. Curiosity also extends to the doctor’s own person—the exploration of one’s own feelings, emotions, and reactions to the patient and his or her story.

Context: This is pertinent to both patient and doctor. It includes family, work, community, spirituality, beliefs, values, time constraints, and expectations at a personal and societal level. It is often useful to ask, “Why has this patient presented at this moment with this problem?”

Complexity: Nothing is ever straightforward because when something changes, a ripple effect is created. A sense of complexity is therefore required, as is an awareness of the interconnectedness of things, in order to counter fixed notions of cause and effect, “unchangeability,” and the concrete solutions with which patients burden themselves.

Challenge: It is important to challenge the patient and one’s self to consider new ideas and alternate explanations, and to contemplate change and how that might be brought about realistically.

Caution: It is also necessary to have an awareness of one’s limitations and be sensitive to the patient and his or her needs, including willingness to go into unexplored areas and readiness for change.

Care: Care requires being nonjudgmental and accepting patients for who they are. Nothing can be achieved if the doctor does not genuinely care about the patient.

The power of language.

The power of language should not be underestimated.^{6,8,11,27,30,33} The same conversation that explores and draws out the patient narrative can also become an instrument of change (Box 1) by opening up new possibilities for the patient.^6,8,17,32,33 Change is not imposed on the patient, but rather options are considered, readiness to change is assessed, and the patient is empowered accordingly (co-construction or cocreation).^{6,8,16,17,32,33}

Launer’s approach to NBM is grounded in family therapy, and the style of questioning used by the doctor in the “conversations inviting change” would be familiar to GPs with a special interest in counseling. Charon’s approach is grounded in the analysis of literary texts. Each approach highlights particular yet important aspects of narrative, and the 2 approaches complement each other. Both Charon and Launer agree about what NBM is (Box 2), its power (Box 3), and its importance to medical practice.

Box 2. What is narrative-based medicine?

Narrative-based medicine is about ...

• storytelling—the patient’s story, primarily, but also the doctor’s story and how these stories interweave in the clinical encounter to create a new story with new meaning and understanding and the possibilities for change

• acknowledging the uniqueness of each patient, validating his or her “story,” and empathizing through genuine interest and concern

• recognizing the divide that can exist between doctor and patient and taking steps to bridge that divide by developing and strengthening connections. For the doctor this entails listening closely; exploring fears, feelings, and emotions; and developing a deeper understanding, not only of the illness experience but also of the patient and of the self

Box 3. Benefits of narrative-based medicine.

Narrative-based medicine ...

• is intrinsically therapeutic for the patient (in the telling and in being listened to)

• prevents the disconnect that might otherwise occur between doctor and patient

• promotes ...

  • -deeper understanding of the patient and
  • -empathy

• improves rapport and strengthens the doctor-patient relationship

• enhances the doctor’s powers of reflection (with respect to both patient and doctor)

• increases awareness

• facilitates management, as well as having the potential for considerable change

Narrative-based medicine, by shifting the focus to the patient narrative, fundamentally changes the doctor’s stance¹¹ toward the patient so that the doctor’s focus becomes “attentive listening”^11,33 and “the need to understand,”^11,33 rather than “the need to problem solve.” When using narrative skills, the doctor is in a better position to empathize¹³ with the patient’s plight and, ultimately, to improve health outcomes,^16,28 opening a path toward healing³³ even in complex and challenging situations.

Conclusion

All sorrows can be borne if you put them into a story or tell a story about them.

Attributed to Karen Blixen (also known as Isak Dinesen)

The healing power of narrative is repeatedly attested to.^{2,3,8,11,13,16,23,28,31–34} The scientific evidence, however, with respect to NBM’s effectiveness, is sparse. Fioretti et al¹⁷ reviewed the research in order to clarify the scientific evidence concerning NBM’s role. They concluded that NBM “is a useful tool to assess the patients’ experience of illness and could be implemented in daily medical practice.” Several authors^6,17,33 cite studies that demonstrate that practitioner narrative skills not only increase patient well-being but also reduce cancer pain, reduce disease activity in rheumatoid arthritis, improve lung function in asthma, and improve immune response following hepatitis B immunization. If NBM is to be incorporated more broadly in clinical practice, more research is needed to better define NBM’s role, understand the specific skills required for practice, and determine NBM’s outcomes with respect to illness and disease.¹⁷ The next 2 articles in this series will explore the skills necessary to practise NBM and offer some ways in which GPs can start using those skills, as well as developing them further.^35,36

Editor’s key points

• ▸ Narrative-based medicine (NBM) is often described, somewhat simplistically, as “listening to the patient’s story.” However, NBM entails much more and requires particular skills. Perhaps for these reasons, and despite its benefits, NBM is not as widely practised as it might be.

• ▸ This is the first of 3 articles that aim to define NBM, outline the skills that are required to practise it, and present some practical ways in which GPs can start using the skills of NBM, as well as methods for developing those skills further.

• ▸ This article shapes a definition of NBM, describes the benefits of an NBM approach, and details the importance of and challenges to understanding the illness experience. Charon’s 4 divides that contribute to the disconnection that might occur between doctor and patient are outlined, as are Launer’s 7 Cs for conversations inviting change.

Points de repère du rédacteur

• ▸ La médecine narrative est souvent décrite, de manière plutôt simpliste, comme « l’écoute de l’histoire du patient ». Toutefois, la médecine narrative implique bien plus que l’écoute et exige des habiletés particulières. En dépit de ses bienfaits, c’est peut-être pour ces raisons qu’elle n’est pas pratiquée aussi largement qu’elle le pourrait.

• ▸ Le présent article est le premier d’une série de 3 qui visent à définir la médecine narrative, à expliquer les compétences nécessaires pour l’exercer, à proposer des conseils pratiques pour permettre aux omnipraticiens de commencer à utiliser les habiletés de la médecine narrative et à présenter des méthodes pour perfectionner ces compétences.

• ▸ Cet article formule une définition de la médecine narrative, décrit les bienfaits d’une telle approche, et explique l’importance de comprendre le vécu de la maladie et les difficultés rencontrées pour ce faire. On y explique les 4 fossés selon Charon qui contribuent à la déconnexion susceptible de se produire entre le médecin et le patient, de même que les 7 éléments de la conversation qui invitent au changement selon Launer.