Illness narratives: reliability, authenticity and the empathic witness

Several scholarly trends, such as narrative medicine, patient-centered and relationship-centered care, have long advocated for the value of the patient's voice in the practice of medicine. As theories of textual analysis are applied to the understanding of stories of illness, doctors and scholars have the opportunity to develop more nuanced and multifaceted appreciation for these accounts. We realize, for example, that a patient's story is rarely “just a story,” but is rather the conscious and unconscious representation and performance of intricate personal motives and dominant meta-narrative influences. Overall, this complexifying of narrative is beneficial as it reduces readers' and listeners' naïve assumptions about reliability and authenticity. However, the growing body of scholarship contesting various aspects of personal narratives may have the unintended effect of de-legitimizing the patient's voice because of concerns regarding its trustworthiness. Further, the academy's recent focus on transgressive, boundary-violating counternarratives, while meant to right the balance of what constitutes acceptable, even valuable stories in medicine, may inadvertently trivialize more conventional, conformist stories as inauthentic. While acknowledging the not inconsiderable pitfalls awaiting the interpreter of illness narratives, I argue that ultimately, physicians and scholars should approach patient stories with an attitude of narrative humility, despite inevitable limits on reliability and authenticity. While critical inquiry is an essential part of both good clinical practice and scholarship, first and foremost both types of professionals should respect that patients tell the stories they need to tell.

[1]  Sayantani Dasgupta Narrative humility , 2008, The Lancet.

[2]  David Oliviere,et al.  Narrative and stories in health care : illness, dying, and bereavement , 2009 .

[3]  Lorinda M. Sheppard,et al.  Why Physicians Are Unprepared to Treat Patients Who Have Alcohol‐ and Drug‐related Disorders , 2001, Academic medicine : journal of the Association of American Medical Colleges.

[4]  Sayantani Dasgupta Being John Doe Malkovich: Truth, Imagination, and Story in Medicine , 2007, Literature and medicine.

[5]  J. Shapiro Medicine and Humanistic Understanding: The Significance of Literature in Medical Practices (review) , 2006 .

[6]  M. Beach,et al.  Relationship-centered care. A constructive reframing. , 2006, Journal of general internal medicine.

[7]  A. Frank The necessity and dangers of illness narratives, especially at the end of life , 2009 .

[8]  T. Greenhalgh,et al.  Narrative Research in Health and Illness , 2004 .

[9]  Judith A. Hall,et al.  Liking in the physician--patient relationship. , 2002, Patient education and counseling.

[10]  Yiannis Gabriel The voice of experience and the voice of the expert: can they speak to each other? , 2008 .

[11]  Lars-Christer Hydén and Jens Brockmeier Introduction: From the Retold to the Performed Story , 2008 .

[12]  W. Riggan,et al.  The Rhetoric of Fiction , 1984 .

[13]  T. R. Egnew,et al.  The Meaning Of Healing: Transcending Suffering , 2005, The Annals of Family Medicine.

[14]  C. Mattingly,et al.  “Fiction” and “Historicity” in Doctors' Stories , 2001 .

[15]  J. Banks The Story Inside , 1999, HEC forum : an interdisciplinary journal on hospitals' ethical and legal issues.

[16]  Wendy Ryden Stories of Illness and Bereavement: Audience and Subjectivity in The Therapeutic Narrative , 2009 .

[17]  Charles A. Johnson,et al.  Patient-Centered Medicine: Transforming the Clinical Method , 1995 .

[18]  Gail Eva Narrative, Story, and Service Evaluation—patients' Stories and their Consequences , 2009 .

[19]  M. Lerner,et al.  The Belief in a Just World: A Fundamental Delusion , 1980 .

[20]  G. Couser Vulnerable Subjects , 2003, The Work of Life Writing.

[21]  R. Charon,et al.  Narrative Medicine: Form, Function, and Ethics , 2001, Annals of Internal Medicine.

[22]  L. Diedrich Treatments: Language, Politics, and the Culture of Illness , 2007 .

[23]  J. Zarconi,et al.  Derogatory and cynical humour directed towards patients: views of residents and attending doctors , 2009, Medical education.

[24]  T. Holt Narrative Medicine and Negative Capability , 2005, Literature and medicine.

[25]  K. Burke Permanence and Change: An Anatomy of Purpose , 1984 .

[26]  J. Velleman Narrative Explanation , 2004 .

[27]  C. Mattingly,et al.  Narrative and the Cultural Construction of Illness and Healing , 2001 .

[28]  Ross Chambers,et al.  Story and Situation: Narrative Seduction and the Power of Fiction , 1984 .

[29]  T. Schofield Patient-Centered Medicine: Transforming the Clinical Method , 1995 .

[30]  E. Klaver The body in medical culture , 2009 .

[31]  Brian Hurwitz,et al.  Narrative based medicine : dialogue and discourse in clinical practice , 1998 .

[32]  Rebecca Garden Telling Stories about Illness and Disability: The Limits and Lessons of Narrative , 2010, Perspectives in biology and medicine.

[33]  A. Frank Asking the Right Question about Pain: Narrative and Phronesis , 2005, Literature and medicine.

[34]  S. Weiss,et al.  Narrative Medicine: Honoring the Stories of Illness , 2007, Annals of Internal Medicine.

[35]  Charles M. Anderson Me acuerdo: Healing Narrative in Stones for Ibarra , 2007, Literature and medicine.

[36]  R. Charon,et al.  Psychoanalysis and narrative medicine , 2008 .

[37]  C. Freytag The Wounded Storyteller: Body Illness, and Ethics , 1996, Nature Medicine.

[38]  S. Poirier,et al.  The voices of the medical record , 1990, Theoretical medicine.

[39]  R. McDougall,et al.  Developing “Ethical Mindfulness” in Continuing Professional Development in Healthcare: Use of a Personal Narrative Approach , 2009, Cambridge Quarterly of Healthcare Ethics.

[40]  J. Coulehan,et al.  Keeping Faith: Ethics and the Physician-Writer , 2003, Annals of Internal Medicine.

[41]  Jens Brockmeier,et al.  Health, illness and culture : broken narratives , 2008 .

[42]  J. Paley,et al.  Narrative machinery , 2009 .

[43]  J. Brown Patient-centred medicine: Transforming the clinical method , 1998 .