The Role of Narrative in Healing (Part -1)

Honoring the stories of illness | Dr. Rita Charon* | TEDxAtlanta

 What is Narrative Medicine?

The care of the sick unfolds in stories. The effective practice of healthcare requires the ability to recognize, absorb, interpret, and act on the stories and plights of others. Medicine practiced with narrative competence is a model for humane and effective medical practice. It addresses the need of patients and caregivers to voice their experience, to be heard and to be valued, and it acknowledges the power of narrative to change the way care is given and received.

Health care and the illness experience are marked by uneasy and costly divides: between those in need who can access care and those who cannot, between health care professionals and patients, and between and among health care professionals themselves. Narrative medicine is an interdisciplinary field that challenges those divisions and seeks to bridge those divides. It addresses the need of patients and caregivers to voice their experience, to be heard and to be valued, and it acknowledges the power of narrative to change the way care is given and received. [1]

 

Narrative in the Indian Health Care System

A highly reputed and comprehensive book on public health and community medicine [2] recommends this approach to a patient when taking the medico-social history:

 

Approach to the patient : 
Introduce yourself with a friendly greeting, giving your name and status. Explain the purpose of your visit, ask for and remember the patient’s name and request permission to interview and examine the patient. Some patients rapidly tire of being questioned or examined, and others may be depressed because they are ill or apprehensive. If there are difficulties in establishing a rapport, try to determine the reason; if in doubt, consult the medico-social worker or nursing staff. Show tolerance, particularly with the elderly and the challenged. Seek first to understand and not judge the patient so that you don’t react to patients with criticism, anger or dismissal. Some additional tips for effective medico-social case taking are :

  • Maintain good eye contact
  • Listen attentively
  • Facilitate verbally and non-verbally
  • Touch patients appropriately
  • Discuss patients’ personal concerns
  • Give the patient your undivided attention
  • Keep your notes-taking to a minimum when the patient is talking
  • Use language which the patient can understand
  • Let patients tell their own story in their own way
  • Use open questions initially and specific (closed) questions later
  • Clarify the meaning of any lay terms which patients use
  • Remember that the history includes events up to the day of interview
  • Summarize (reflect back) the story for the patient to check
  • Utilize all available sources of information

All medical professionals should not simply confine themselves to only the medical aspects of the disease but view a given disease in totality. This can be achieved by training in the various aspects of medico-social case taking and family case studies. The basic principle which must be kept in mind while undertaking a medico-social work-up is that while the patient is the core issue, his disease is actually a result of complex psycho social interactions and a systematic assessment of all these factors is therefore necessary to be able to reach the root of the problem and to effectively plan a holistic therapy. [2]

The recommendations above embody the core approach of “Narrative Medicine”.

Most people who have sought treatment at a civilian public hospital in India would readily agree that these recommendations are rarely followed. There are many “justifiable” and “unavoidable” reasons for that but ultimately, it is the person who is suffering who does not get what they deserve from the medical system.

Most doctors, especially in India, where medical malpractice litigation is not as big a problem as in USA, and where the sheer volume of patients preclude any frivolous leanings towards letting the patient talk any more than is necessary to start writing out the prescription, would agree that history taking in terms of narrative listening is certainly not taught or encouraged in practice (they may be mentioned in theory).

Doctors will readily related to this:

Sadly, we know that it is not always easy to tell doctors what the matter is. Medical training enforces a particular method of listening to patients’ narratives of illness. Most North American medical schools teach doctors to report a patient’s history using a standard outline: chief complaint, history of present illness, past medical history, social history, family history, review of systems (questions about all organ systems of the body), physical examination, laboratory test results, formulation, assessment, and plan. Doctors, especially inexperienced doctors, elicit information from patients in this sequence too. You will hear a doctor saying to a patient who has just disclosed the death of a parent, “We’ll get to that in Family History.” Because many health professionals are uncomfortable around emotion and uneasy when the medical interview is not crisply and evidently focused on the physical problem at hand, they structure the conversation as it unfolds by interrupting the patient and redirecting him or her to furnish only medically relevant information in the order dictated by the doctor’s outline. [3]

Drs. David Hatem and Elizabeth A. Rider write:

Yet stories have an uncertain place in the world of medicine. There is an increasing push toward evidence-based thinking. The anecdote is disparaged as “soft” in contrast with “hard” clinical data. But as details of disease are pursued, there are details of a life that may be left behind. The language of biomedical disease conflicts with the details of patient illness. More recently there have been calls for moving beyond “taking” a history from the patient, for the integration of evidence-based medicine and patient-centered care. But even patient-centered care is coming to be promoted as a science, and the risk continues of losing the story at the center of the encounter; the patients’, the providers’, the shared narrative that gives context or meaning to the illness for the patient and to the work for the provider.[4]

So, finally, the most important actionable question is, “Can you teach listening?” 
Can it improve patient care? Can it make one a better doctor without making medical care slow or ineffective or cost-ineffective?

How can a doctor be trained in Narrative Competence? 

 

Narrative Humility: Sayantani DasGupta** at TEDxSLC

Yes, narrative competence can be taught, and that is the vision behind the courses on Narrative Medicine offered in some universities around the world.

The Narrative Medicine master’s program at Columbia University was the brain child of Dr. Rita Charon, and continues to be a brave and ground breaking initiative that I hope in coming times will make “listening with attention” a tangible competence for a medical practitioner.  As a patient of a chronic painful illness and invisible disability, I know the value of a doctor who lets me speak even when there is no cure for my condition.
http://sps.columbia.edu/narrative-medicine

A masters course in Applied Narrative Medicine is being offered by ISTUD, Italy.
(Read more here)

The journal “Patient education and counseling”, now carries a section, Reflective practice, that is devoted to narrative content in the context of medicine.

From the call for papers : 

Reflective Practice is a new section that will appear periodically in PEC (Patient education and Counseling) to provide a voice for physicians and other healthcare providers, patients and their family members, trainees and medical educators. The title emphasizes the importance of reflection in our learning and how our patient and self-care can be improved through regular practice, similar to other health provider skills. We welcome personal narratives from clinicians of all types on their perspective on caring, patients’ perspectives, the patient–provider relationships, humanism in healthcare, professionalism and its challenges, and collaboration in patient care and counseling. Most narratives will describe personal or professional experiences that provide a lesson applicable to caring, humanism, and relationship in health care. 

While researching narrative medicine, I found that there is a book (details at the end of the post),
User-Driven Healthcare and Narrative Medicine: Utilizing Collaborative Social Networks and Technologies” by Rakesh Biswas, who is a professor of Medicine in the People’s College of Medical Sciences, Bhopal, India (co-authored by Carmel Mary Martin from Northern Ontario School of Medicine, Canada). Many of the contributing authors are Indians, which was interesting to me. I have not yet read this book. However, the focus of the book appears to be on the use of information technology and social networks in delivering user driven healthcare.

In the Indian context, I think the application of narrative medicine in public health care system will require a massive paradigmatic shift, that may not be possible in any near future.

————————————————-

Short introduction to the speakers in the videos above:

*Rita Charon, is Professor of Clinical Medicine and Director of the Program in Narrative Medicine at the Columbia University College of Physicians and Surgeons. A general internist with a primary care practice in Presbyterian Hospital, Dr. Charon took a Ph.D. in English when she realized how central is telling and listening to stories to the work of doctors and patients. She is author of “Narrative Medicine: Honoring the Stories of Illness” and co-editor of “Psychoanalysis and Narrative Medicine and Stories Matter: The Role of Narrative in Medical Ethics.”

**Sayantani DasGupta is a physican and writer, originally trained in pediatrics and public health, who is a faculty member in the Master’s Program in Narrative Medicine at Columbia University and the Graduate Program in Health Advocacy at Sarah Lawrence College. Sayantani teaches courses on illness and disability memoir, and narrative, health and social justice. Dr. DasGupta is co-author of The Demon Slayers and Other Stories: Bengali Folktales (1995), author of Her Own Medicine: A Woman’s Journey from Student to Doctor (1999), and co-editor of Stories of Illness and Healing: Women Write Their Bodies (2007).

———————————————

References:

[1] Overview of Course: Master of Science in Narrative Medicine, Columbia University, USA. http://sps.columbia.edu/narrative-medicine
[2] Chapter 114, "Family Health History & Individual Medico-Social History-Taking", authored by RajVir Bhalwar & SSL Parashar in "Text book of public health and community medicine", Bhalwar R, Gupta RK, Kunte R, Tilak R, Vaidya R, editors. Department of Community Medicine, Armed Forces Medical College: World Health Organization; 2009]
[3] Narrative Medicine : Honoring the Stories of Illness: Honoring the Stories of Illness, Rita Charon, Oxford University Press, USA, 2006. Read more about the book here:  http://medhum.med.nyu.edu/view/12481
 
 [4] Hatem, David, and Elizabeth A. Rider. "Sharing stories: narrative medicine in an evidence-based world." Patient Education and Counseling. 54.3 (2004): 251-253.

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Books on Narrative Medicine:

Front Cover

Narrative Medicine : Honoring the Stories of IllnessHonoring the Stories of Illness
Rita Charon,
Oxford University Press,  2006

Narrative medicine has emerged in response to a commodified health care system that places corporate and bureaucratic concerns over the needs of the patient. Generated from a confluence of sources including humanities and medicine, primary care medicine, narratology, and the study of doctor-patient relationships, narrative medicine is medicine practiced with the competence to recognize, absorb, interpret, and be moved by the stories of illness. By placing events in temporal order, with beginnings, middles, and ends, and by establishing connections among things using metaphor and figural language, narrative medicine helps doctors to recognize patients and diseases, convey knowledge, accompany patients through the ordeals of illness–and according to Rita Charon, can ultimately lead to more humane, ethical, and effective health care. Trained in medicine and in literary studies, Rita Charon is a pioneer of and authority on the emerging field of narrative medicine. In this important and long-awaited book she provides a comprehensive and systematic introduction to the conceptual principles underlying narrative medicine, as well as a practical guide for implementing narrative methods in health care. A true milestone in the field, it will interest general readers, and experts in medicine and humanities, and literary theory.

Narrative Medicine: Bridging the Gap between Evidence-Based Care and Medical Humanities

Maria Giulia Marini

Springer, Oct 27, 2015

This book examines all aspects of narrative medicine and its value in ensuring that, in an age of evidence-based medicine defined by clinical trials, numbers, and probabilities, clinical science is firmly embedded in the medical humanities in order to foster the understanding of clinical cases and the delivery of excellent patient care. The medical humanities address what happens to us when we are affected by a disease and narrative medicine is an interdisciplinary approach that emphasizes the importance of patient narratives in bridging various divides, including those between health care professionals and patients. The book covers the genesis of the medical humanities and of narrative medicine and explores all aspects of their role in improving healthcare. It describes how narrative medicine is therapeutic for the patient, enhances the patient–doctor relationship, and allows the identification, via patients’ stories, of the feelings and experiences that are characteristic for each disease. Furthermore, it explains how to use narrative medicine as a real scientific tool. Narrative Medicine will be of value for all caregivers: physicians, nurses, healthcare managers, psychotherapists, counselors, and social workers.

Front Cover

Integrating Narrative Medicine and Evidence-based Medicine: The Everyday Social Practice of Healing
James P. Meza, Daniel S. Passerman

Radcliffe Publishing, 2011

Scientific, evidence-based medicine is increasingly seen as fundamental to providing effective healthcare, but narrative-based medicine sheds light on social and interpersonal aspects of the practitioner-patient interaction which can also greatly affect healthcare outcomes. The philosophies underlying these two approaches seem to contrast, yet those who can integrate both into their practice are among the most successful medical professionals. Integrating Narrative Medicine and Evidence-based Medicine provides answers to the key question of how medical practitioners can best put both approaches into practice. It anticipates a future where evidence-based practice will be expected of all medical professionals, but contends that the integration of a narrative-based approach will also be crucial, presenting a unique perspective on structuring the patient-professional encounter for optimum results. It develops a cultural analysis and socio-cultural theory of the science of healing, and describes an efficient method by which medical practitioners can find and use medical research at the point of care with current technology and skills.
Front Cover
Narrative Based Medicine
 
Trisha Greenhalgh, Brian Hurwitz
Wiley1998
Edited by two leading general practitioners and with contributions from over 20 authors, this book covers a wide range of topics to do with narrative in medicine. It includes a wealth of real examples of patients narratives and addresses theoretical and practical issues including the use of narrative as a therapeutic tool, teaching narrative to students, philosophical issues, narrative in legal and ethical decisions, narrative in nursing, and the narrative medical record.

 

Front Cover
User-Driven Healthcare and Narrative Medicine: Utilizing Collaborative Social Networks and Technologies: Utilizing Collaborative Social Networks and Technologies

Rakesh Biswas and Carmel Mary Martin

IGI Global2010

E-healthcare, Health 2.0, and user driven healthcare are steadily increasing in popularity among patients and healthcare professionals. In spite of this, there is surprisingly little written about the wealth of information available on the Web created by individual healthcare users, in terms of their experiential disease narratives, potential learning, and improved healthcare results.
User-Driven Healthcare and Narrative Medicine: Utilizing Collaborative Social Networks and Technologies fills this gap by exploring various individual user driven strategies that move towards solving multiple clinical system problems in healthcare, utilizing real life examples. Documenting individual concrete experiences, reflective observations, abstract conceptualizations and particular instances of active experimentation, this text is a valuable resource not only for the healthcare academic community, but patients interested in social networking to improve their own healthcare outcomes.
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About Hypermobility Syndrome India/Viv

I an an Indian woman with Ehlers Danlos Syndrome Hypermobility Type (EDS-HT), also known as joint hypermobility syndrome. Although I have "suffered" from this disease all my life, I was diagnosed at 38 years, 2 years after my child was born. My work mainly involves being a mom to my beautiful and compassionate child. I also write and work from home in the field of science. I aim to raise awareness about EDS-HT, chronic pain, invisible illnesses, mental illnesses and invisible disabilities through my blogs. Viv (Latin root, meaning Life/ Alive) is my blogging pseudonym and alludes to my continued endeavor to rediscover my life and its meaning.
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