University of Tennessee, Knoxville TRACE: Tennessee Research and Creative Exchange Masters Theses Graduate School 8-2003 The doctor as patient : a thematic analysis of physician autopathographies on cancer Claire Betterton Follow this and additional works at: https://trace.edu/utk_gradthes Recommended Citation Betterton, Claire, "The doctor as patient : a thematic analysis of physician autopathographies on cancer. " Master's Thesis, University of Tennessee, 2003.edu/utk_gradthes/5193 This Thesis is brought to you for free and open access by the Graduate School at TRACE: Tennessee Research and Creative Exchange. It has been accepted for inclusion in Masters Theses by an authorized administrator of TRACE: Tennessee Research and Creative Exchange. For more information, please contact trace@utk.
To the Graduate Council: I am submitting herewith a thesis written by Claire Betterton entitled "The doctor as patient : a thematic analysis of physician autopathographies on cancer." I have examined the final electronic copy of this thesis for form and content and recommend that it be accepted in partial fulfillment of the requirements for the degree of Master of Science, with a major in Communication. Paul Ashdown, Major Professor We have read this thesis and recommend its acceptance: Accepted for the Council: Carolyn R. Hodges Vice Provost and Dean of the Graduate School (Original signatures are on file with official student records.) To the Graduate Council: I am submitting herewith a thesis written by S. Claire Betterton entitled, "The Doctor as Patient: A Thematic Analysis of Physician Autopathographies on Cancer." I have examined the final paper copy of this thesis for form and content and recommend that it be accepted in partial fulfillment of the requirements for the degree of Master of Science, with a major in Communications.
We have read this thesis and recommend its acceptance: t!E/4- C. Edward Caudill � Acceptance for the Council: Vice Provost and Graduate Studies THE DOCTOR AS PATIENT: A Thematic Analysis of Physician Autopathographies on Cancer A Thesis Presented for the Master of Science Degree The University of Tennessee, Knoxville S. Claire Betterton August 2003 Copyright © 2003 by S. Claire Betterton All rights reserved.
ii DEDICATION To my husband, Andrew W., whose medical training experiences I have enjoyed and learned from vicariously and whose perseverance and humility I seek to imitate. To my father and mother, Carl E. Betterton, whose gifts of love and care thorough all the years would take endless volumes to recount. And to my sisters, Lauren and Rachel.
I love you all. iii ACKNOWLEDGEMENTS For their steadfast commitment, wise counsel, and uplifting encouragement throughout the graduate school and thesis writing journey, I acknowledge with deep gratitude my thesis committee trio, Paul Ashdown, Ed Caudill, and Jim Crook, as well as two other faculty members, Mark Littmann and Dwight Teeter. The dedication to excellence demonstrated by all of these professors in the classroom and out has been and will continue to be an inspiration for my own teaching and learning. Thanks to Cheryl Koski for providing guidance during the idea gathering stage for this thesis.
And thanks to Diana King in the College of Communications Graduate Studies Office and Catherine Cox, graduation specialist in the Office of the University Registrar, for their invaluable assistance with administrative details over the past two semesters. I also thank the physician authors of the books analyzed in this thesis, as it couldn't exist without them, either. Special thanks to Michael A., who took time to talk about their autopathographies in personal interviews. iv ABSTRACT This thesis documents an investigation into the literary genre of physician autopathography-physician-authored autobiographical accounts of personal experience with illness/disease, injury or disability.
At a general level, it explores potential explanations for the growth of this genre over the last 25 years. In addition, it compiles the first known bibliography of physician autopathography. At a more detailed level, through comprehensive thematic analysis of nine selected autopathographies on cancer, this thesis provides the foundation for a taxonomy to capture the manner in which the physician authors respond to the illness experience across their dual roles of patient and doctor. Three main categories are revealed and elaborated.
Five authors are high doctor/low-patient (DOCTOR/patient), four are high-doctor/high-patient (DOCTOR/PATIENT), and one is low-doctor/high-patient (doctor/PATIENT). The DOCTOR/patients cling fast to the doctor role. They are least accepting of the necessary transition to patienthood and most vocally rebel against it. They maintain an active, authoritative physician persona throughout their experience with cancer.
The DOCTOR/PATIENTS position themselves with one foot on each side of the so-called dividing line between the physician role and the patient role. Their illness is met with resistance because of their status as physicians, but they are also more willing or able than the DOCTOR/patients to accept the vulnerabilities the transformation to patient brings. The doctor/PATIENTS show only vestiges of the physician role in the experience of illness. They are the most accepting of the patienf s passive status and demonstrate the smoothest transition from the role of doctor to that of patient.
V TABLE OF CONTENTS Chapter Page ONE/Introduction. 1 TWO�iterature Review. 5 The rise of physician autopathography 5 The categorization of autopathography 18 The patient role, the physician role, and response to illness 22 Summary 27 THREE/J. 28 Criteria for defining physician autopathographies 31 Strategy for locating physician autopathographies 34 Results of the search for physician autopathographies 34 Criteria for selecting primary sources 46 FOUR/Analysis and Findings.
54 (1) The DOCTOR/patients 55 (2) The DOCTOR/PATIENTS 72 (3) The doctor/PATIENTS 86 FIVE/Conclusion. 94 Suggestions for future research 99 Works Cited. 120 vi CHAPTER ONE Introduction Over one year, ending in 2001, researchers at Johns Hopkins University School of Medicine interviewed physicians who had been patients with cancer. In a petition calling for such physicians to share their experience, the researchers noted the little effort that has been made, even into the beginning of the 21st century, to understand how physicians experience patienthood.
1 Part of the problem is that physicians tend to be fairly reticent about publicly communicating a serious personal illness experience. For hundreds of years, physicians have documented observations about diseases they contracted, but for the most part, these have been in the form of anonymous case reports for research purposes or in minor segments of medical journals and essays. But beginning in the mid- 1970s, U. physicians began publishing, in small number, autopathographies2- book length autobiographical accounts about their personal experiences as a patient with 1 A flyer highlighting the lack of research on physicians as patients and seeking physicians with cancer for interviews about their experience was posted on the Johns Hopkins Web site in 2000 ("Physicians With Cancer Study")., lead researcher, said in an e-mail message that the interviews were completed in June 2001, and a paper based on the findings is in review for possible publication in August or September 2003 ("Re: Physicians With Cancer Study").
2 This is the author's preferred term for autobiographical narratives about an experience with illness/disease, disability or injury, although scholars have labeled works of this type with a variety of other names, including pathographies, illness narratives, and even stories of sickness. Aronson, a reader in clinical pharmacology at Oxford University, writes that the earliest use of "autopathography" that he has found is in a 1911 article by Clarence B. Farrar titled "Documented Delirium: An Autopathography" in the American Journal of Insanity, vol. The earliest modern example he has found is in an article by G.
Thomas Couser titled, "Autopathography: Women, Illness, Lifewriting," in the Spring 1991 issue of alb: Auto/biography Studies, vol. Aronson writes that the term, 'pathography' was "originally defined in 1853 in Dunglison's Medical Lexicon as a description of disease, and later as 'the study of the effects of any illness on the writer's. life or art .'" He continues, "The word was probably first used in this sense by Sigmund Freud, in Eine Kindheitserrinerung des Leonardo da Vinci (1910). 1 significant illness, disability or injury.
As the next two and a half decades progressed, the number of these works grew. Literary scholars have come to view autobiography in general, which is among the strongest and most durable features of the modem publishing industry, no longer as a "pedestrian category of history" but as a type of literature worthy of study (Bjorklund 11). Non-physician autopathography, proliferating since the 1950s, is beginning to be analyzed by scholars doing textual and cultural studies, and American medical schools in an effort to counteract patients' complaints that their doctors don't recognize or listen to the emotional aspects of illness in today's increasingly mechanized health care industry-are even using these "patients' stories" to augment students' clinical training (McLellan, "Literature and Medicine: Narratives" 1,6 18). While the voices of physician patients could also serve as an important resource in this regard, physician autopathographies have gone virtually unnoticed.
Academics in various disciplines have indeed documented the rise in the number of these works, but they have not explained reasons for the phenomenon. Nor is there a bibliography that provides a comprehensive list of the works that comprise this relatively new genre. 3 Probably the most widely known physici� autopathography is Edward E. Rosenbaum's The Doctor: When the Doctor is the Patient (first published in 1988 as A Taste of My Own Medicine).
The book became a paperback bestseller in 1991, was made into an acclaimed movie the same year called "The Doctor," and was published in nearly 3 A genre is a category of any kind of artistic work that can be established on the basis of form, style or subject. Autobiography itself can be "broken down into a series of genres" based on "story types in terms of subject matter"-such as war stories and hospital stories (Chamberlain and Thompson 11 qtd. Physician autopathography can therefore be considered a genre.4 Like other physician autopathographies, The Doctor provides a unique "insider's" account of the doctor-turned-patient experience. What seems to capture people's interest most in such stories is the issue of role reversal.
Physicians and the public are intrigued, if not intimidated, by doctors becoming patients. Such ironic reversal of professional perspective was illustrated in the January 4, 2001, episode of the popular NBC television drama, "ER," as Dr. Mark Greene submits to experimental brain surgery for a tumor ("Piece of Mind"). In such scenarios, the doctor wrestles with sudden helplessness.
"He is used to having all the answers, but now somebody else holds the information. He is the one dictating orders in a white lab coat, but now he lies[ .] in bed in a paper gown" (Zulkey par. "Patienthood is often the antithesis of doctorhood" (Schneck 2,042). As Mandell and Spiro explain, "When a doctor gets sick, his status changes.
No longer is his role defined as deriving from doctus, i., learned, but as from patiens, the present participle of the deponent Latin verb, patior, i. to suffer, with all the passive acceptance of pain the verb implies. It is the connotation, not the denotation, of the word that defines the change of status" (vii). The one who is trained to restore health and maintain life now finds his health challenged and his life possibly at risk.
The healthy physician develops defenses against disease in order to feel immune in the face of sickness and death. When a doctor becomes a patient, he or she faces an implied loss of control in a profession that prides itself on the control of illness in others (Lundin 1,082). A dividing line exists between the role of patient and the role of doctor, described by one physician diagnosed with breast cancer: "One part of her was a sick, frightened patient.] The other part 4 Rosenbaum, ''Telephone Interview." 3 was a disciplined observant scientist keeping track of[. ] white blood cell counts, fever curves, and drug flow sheets" (Keoun 1,616).
Part of what the Johns Hopkins researchers were looking for relates to more thoroughly understanding the nature of this physician-to-patient shift. Physician autopathographies, like Rosenbaum's text, are a source for detailing how physicians, as a unique class of patient, express the patient role.