Developing Clinicians' Career Pathways in Narrative and Relationship-Centered Care: Footprints of Clinician Pioneers

290 Pages·2012·22.111 MB·\290

by  John D Engel (Author), Lura L Pethtel (Author), Joseph Zarconi (Author)

Developing Clinicians' Career
Pathways in Narrative and
Relationship-Centered Care
FOOTPRINTS OF CLINICIAN PIONEERS
JOHN DENGEL
PhD
Scientific Director and Founding FeUow
Institute for Professionalism Inquiry
Summa Health System
Professor Emeritus of Behavioral Sciences
Northeast Ohio Medical University
LURA L PETHTEL
MEd
&search Coordinator and Founding Fellow
Institute for Professionalism Inquiry
Summa Health System
JOSEPH ZARCONI
MD
System Vice President for Medical Education and Chief Academic Officer
Director of the Institute for Professionalism Inquiry
Summa Health System
Professor ofI nternal Medicine and Associate Dean for Clinical Education
Northeast Ohio Medical University
uy
Foreword
MARK SAVICKAS
PhD
Professor of& havioral Sciences
Northeast Ohio Medical University
Boca Raton London New York
CRC Press is an imprint of the
Taylor & Francis Group, an informa business
First published 2012 by Radcliffe Publishing
Published 2018 by CRC Press
Taylor & Francis Group
6000 Broken Sound Parkway NW, Suite 300
Boca Raton, FL 33487-2742
© 2012John D Engel, Lura L Pethtel,a nd Joseph Zarconi
CRC Press is an imprint of Taylor & Francis Group, an Informa business
No claim to original U.S. Government works
ISBN-13: 978-1-84619-573-0 (pbk)
This book contains information obtained from authentic and highly regarded sources. While
all reasonable efforts have been made to publish reliable data and information, neither the
author[s] nor the publisher can accept any legal responsibility or liability for any errors or
omissions that may be made. The publishers wish to make clear that any views or opinions
expressed in this book by individual editors, authors or contributors are personal to them and
do not necessarily reflect the views/ opinions of the publishers. The information or guidance
contained in this book is intended for use by medical, scientific or health-care professionals
and is provided strictly as a supplement to the medical or other professional's own judgement,
their knowledge of the patient's medical history, relevant manufacturer's instructions and the
appropriate best practice guidelines. Because of the rapid advances in medical science, any
information or advice on dosages, procedures or diagnoses should be independently verified.
The reader is strongly urged to consult the relevant national drug formulary and the drug
companies' and device or material manufacturers' printed instructions, and their websites,
before administering or utilizing any of the drugs, devices or materials mentioned in this book.
This book does not indicate whether a particular treatment is appropriate or suitable for a
particular individual. Ultimately it is the sole responsibility of the medical professional to make
his or her own professional judgements, so as to advise and treat patients appropriately. The
authors and publishers have also attempted to trace the copyright holders of all material
reproduced in this publication and apologize to copyright holders if permission to publish in
this form has not been obtained. If any copyright material has not been acknowledged please
write and let us know so we may rectify in any future reprint.
Except as permitted under U.S. Copyright Law, no part of this book may be reprinted,
reproduced, transmitted, or utilized in any form by any electronic, mechanical, or other
means, now known or hereafter invented, including photocopying, microfilming, and
recording, or in any information storage or retrieval system, without written permission from
the publishers.
Trademark Notice: Product or corporate names may be trademarks or registered trademarks,
and are used only for identification and explanation without intent to infringe.
VJSit the Taylor & Francis Web site at
http://www.taylorandfrancis.com
and the CRC Press Web site at
http:// www.crcpress.com
John D Engel, Lura L Pethtel, and Joseph Zarconi have asserted their right under the
Copyright, Designs and Patents Act 1998 to be identified as the authors of this work.
British Library Cataloguing in Publication Data
A catalogue record for this book is available from the British Library.
Typeset by Darkriver Design, Auckland, New Zealand
Contents
Foreword by Mark Savickas PhD v
About the Authors ix
Acknowledgments xi
Preface xii
Career Stories 1
Howard Brody 3
Lenore Buckley 16
Rita Charon 28
Julie Connelly 42
Jack Coulehan 58
Sayantani DasGupta 76
Cortney Davis 88
Trisha Greenhalgh 107
Brian Hurwitz 125
Thomas S Inui 142
Christopher Johns 162
John Launer 175
Debra K Litzelman 191
Carol McWilliam 211
CONTENTS
James B Rickert 222
Karin Swiencki 242
W Wayne Weston 256
Index 267
ιν
Foreword
Inspiration and Instruction from Narrative Medicine Role
Models
Patients have two stories to tell their physicians, one of facts and one of truths.
Although facts and truths are equally important, some physicians choose to
concentrate on listening to just the facts. This book presents the careers of
clinical pioneers who choose to listen to both stories that patients tell. These
practitioners provide inspiration and instruction as they explain how they listen
for two stories. First, they concentrate on the story told by the patient’s body in
the language of signs and symptoms - the body never lies as it speaks of disease
and pain. Clinicians listen to the facts portrayed as the patient performs the
story of disease and then they summarize that story in a diagnosis. Second, they
listen for the story of illness to understand the truths that shape the patient’s
psychological experience of biological disease.
The pioneering clinicians in this book maintain the importance of biotech-
nical competence in listening to stories of disease, but they add psychosocial
sensitivity to the patient encounter in listening for narratives of illness. They
appeal to their colleagues to join them in taking a balanced approach to cur­
ing and caring. For example, Coulehan urges that illness narratives not be
discounted as just psychosocial medicine. Understanding illness actually helps
physicians to make more accurate disease diagnoses and to formulate better
treatment plans. For Coulehan and the other pioneers in this volume, the
process of medicine comes to life in narratives.
These practitioners narrate their own stories to describe and demonstrate the
importance of hearing the narratives of illness and suffering told by patients and
to use this to impose meaning on their experiences of disease and pain. Given
the interest that these practitioners have in stories and given their sensitivity
to words, I was surprised that no one explicitly distinguished disease, illness,
and sickness. Disease is a malfunctioning of biological processes; illness is how
the patient perceives and interprets disease (this meaning-making is socially
v
FOREWORD
constructed by cultural forces); sickness is the way of acting ill in the patient’s
social world. Obviously, how the patient manages sickness will be influenced
by clinical intervention into an illness narrative or by the meaning that the
patient places on disease. This opportunity to influence outcomes explains why
the practitioners in this book care so much about patients’ stories of illness.
Together, the career stories of these clinical pioneers make the case for the
centrality of illness narratives in the contemporary practice of medicine.
As a beginning, Brody instructs readers that a healing person must con­
centrate on more than just curing disease. Healers use narratives to liberate a
patient’s capacity for self-healing. Brody helps patients to tell their stories of
illness in a form that enables them to gain a sense of control of, and maybe
even mastery over, disease. A transformed illness narrative can reduce suffering
and reshape sickness. Connelly asserts that clinicians begin to help patients
transform their illness narratives simply by showing up. Clinicians can only
support patients in their illness if they have met the illness. DasGupta adds the
idea that transformation accelerates when the clinician serves as a witness who
validates the story of suffering. Davis asserts that clinicians may do even more
than validate a story; they may stay with the story as the patient takes the journey.
Buckley explains that illness stories contextualize the disease and locate it in
the social space of a life in progress. Recall that the prefix con is from the Latin
cum, meaning with, so con-text adds that which surrounds the patient’s text or
story. Buckley reminds readers that it is important for patients to have an oppor­
tunity to tell their whole story, especially those with chronic disease. Listening
for the entire narrative helps physicians to identify what is most important to the
patient. Through an illness narrative, patients educate physicians about what
they need and how they want it delivered. Connelly explains that physicians
may use the narrative to understand how best to manage the patient-physician
relationship as an instrument of healing. Writing from personal experience,
Connelly explains that relationship-centered medicine must attend to how
much of oneself clinicians should put into a relationship, when they should do
so, and for how long.
The novelist Eudora Welty* distinguished listening to a story from listening for
a story. Listening to a story of disease means absorbing it by being receptive.
Listening for a story of illness means actively discerning it and collaboratively
shaping it. Charon moves readers to the topic of listening for a story by discuss­
ing narrative competence. She emphasizes the importance of identifying the
* Welty E. One Writer's Beginnings. Cambridge, MA: Harvard University Press; 1983.
VI
FOREWORD
narrative thread that runs through a story and then adopting the governing
images and master motives to communicate with the patient. This discern­
ment requires competence in listening for key metaphors and thematic ideas.
Narrative competence enables clinicians to better understand the process by
which a patient lives with disease, experiences illness, and acts sick.
Launer addresses the process of medicine by explicitly adopting a social
constructionist perspective from which the primary goal of narrative medicine
is to help people make sense of what is happening to them. He encourages
clinicians to let the patient do what the patient needs to do. He helps patients
explore their stories and create new meanings, whether they involve biomedical
facts or biographical truths. Patients are never the sole authors of their illness
narratives; the stories are co-constructed through the patient-physician interac­
tion. Practitioners of narrative and relationship-centered medicine position the
patient as collaborator and coinvestigator, sometimes preferring the metaphor
of patient as author and physician as editor, while always realizing that only
the patient has the power to authorize the story. To foster the healing power
of collaboration, physicians must be willing participants in dialogues that help
patients understand their own experiences of disease. Greenhalgh illustrates
how revising illness narratives through dialogue, not a monologue, can create
a new sense of self and a more adaptive, better way of acting sick.
When physicians engage patients in dialogues that co-construct meaning,
these engagements do more than something for the patient; they do something to
the clinician. Throughout the book, readers will learn what a narrative-centered
approach to medical practice may do for the clinician as a professional and as a
person. Each contributor to this volume has used their own narratives to articu­
late the preoccupations and thematic issues that direct their lives and shape the
meaning of their medical practice. For example, Litzelman quotes her mentor,
Dr Joe Mamlin, to illustrate the outcome of attending to and narrating her
own story: “I have tried as hard as I can to anchor myself in clarity of what my
ultimate concern is. And . . . the answer to that question is love. Period.”
Each clinical pioneer in this book bravely reveals the ultimate concerns
around which they have designed their lives and constructed careers in medi­
cine. As the editors note, readers can follow each pioneer’s footprints along a
career path. Although the editors assembled a diverse panel of practitioners
who articulate a wide variety of personal preoccupations and life themes, I
did notice a striking commonality in the first footprints of their childhood
and adolescent career interests: for most of them it was teaching, psychology,
VII
FOREWORD
philosophy, or writing. This tells me that their original interest or first calling
remains alive in the way they practice medicine. Narrative and relationship-
centered medicine enables them to sustain their original interest in the
humanities. Each practitioner explains how they have integrated a core self
and early interest into the way they interact with patients. In addition to early
interests, readers may benefit from considering the lingering power of role
models in the lives of the practitioners. Readers may also turn this attention
inward to consider the models and mentors they have incorporated into the
design of their own lives.
The editors have made an important contribution to advancing the practice
of narrative and relationship-centered medicine. The book they have crafted
provides information about the core principles and procedures of narrative
medicine. If readers apply this information to their own practices, then the
book will be a success. However, the editors invite readers to engage in some­
thing more. They invite you to listen for the truths of your own story as you hear
the voices of colleagues speak from the pages in your hands. Please engage in
a dialogue with these pioneers who divulge their own stories so that you may
co-construct with them deeper meanings for your professional life and, more
important, for your personal life. As your own story becomes more coherent,
comprehensive, and credible, you will be positioned even more securely to cre­
ate a safe space in which you may work with patients to transform their stories
of illness. Reflecting on the ultimate concerns that move you will enable you
to more fully inhabit your own life story and become more authentic and vital
as you heal others.
Mark Savickas PhD
Professor of Behavioral Sciences
Northeast Ohio Medical University
August 2011
viii
About the Authors
John D Engel, a social scientist, is Scientific Director of the Institute for
Professionalism Inquiry, Summa Health System, and Professor Emeritus of
Behavioral Science at Northeast Ohio Medical University. His research and
teaching interests are the philosophy of social science inquiry, qualitative
methodology, narrative medicine, and integrating humanities and social sci­
ences with health professions education and practice and care of the dying.
John served as founding associate editor for (Qualitative Health Research and
edited the methodology section of that journal. He has been a member of the
editorial board of Evaluation and the Health Professions since its inception. He
has published extensively in his areas of interest and his most recent books are
Narrative in Health Care: healing patients, practitioners, profession, and community;
The Palliative Care and Hospice Caregiver's Workbook: sharing the journey with the
dying, and Restoring Primary Care: reframing relationships and redesigning practice.
Lura L Pethtel is cofounder of the Institute for Professionalism Inquiry (IPI),
Summa Health System, where she participates in various teaching, research, and
evaluation activities and coordinates the Humanism and the Healing Arts con­
ference series. During her long tenure at Northeast Ohio Medical University,
Lura served as Associate Dean for Student and Academic Affairs and taught in
the areas of behavioral sciences and humanities, spirituality and medicine, and
palliative care. With IPI colleagues, she instituted, directed, and taught in the
required narrative medicine course for second-year Summa Family Medicine
residents and has coauthored several journal articles and two books: Narrative
in Health Care: healing patients, practitioners, profession, and community and The
Palliative Care and Hospice Workbook: sharing the journey with the dying, both pub­
lished by Radcliffe Publishing.
Joseph Zarconi is System Vice President for Medical Education and Chief
Academic Officer at Summa Health System in Akron, Ohio, and directs
Summa’s Institute for Professionalism Inquiry, which he cofounded there. He
IX