Narrative in Health Care

Healing Patients, Practitioners, Profession, and Community

John D Engel, Joseph Zarconi, Lura Pethtel, Sally Missimi

• Publisher: CRC Press
• Year: 2017
• ISBN:
  9781315347080
• Edition: 1
• Topic: Medicine
• Subtopic: Public Health, Administration & Care

Narrative medicine has developed an identity already. Clinicians of many disciplines are being summoned to a practice that recognizes patients by receiving their accounts of self. Starting from different positions, the four authors have converged in a strong and shared commitment to narrative health care. They conceptualize narrative health care practices within frameworks derived from the social sciences and psychology, and, to a lesser degree, phenomenology and autobiographical theory. They relate the development of narrative medicine to relationship-centered care, patient-centered care, and complex responsive process of relating theory, positing that narrative medicine can help clinicians to develop the skills required to practice relationship-centered care. The book details - with exercises, resource texts, and abundant scholarly apparatus - how these skills can be developed and strengthened. This work will change health care. Because of its scholarly rigor, its multi-voiced sources, and its highly practical features (lists, activities, key ideas and key references, primary texts written by health care professionals and patients), this work will be a guide in the field for those who practice medicine or nursing or social work. The book establishes that there is a field to be practised, a need to practise it, and a means to develop the wherewithal to do so.

PART 1

Historical Context, Genealogy, and Current Viewpoints

In this first part of the book, we examine the historical background that sets the stage for the place of narrative in the theory and practice of medicine. We travel back to the seventeenth century to rehearse the importance of Enlightenment thinking for the evolution of science, and then move gingerly through the eighteenth and nineteenth centuries to inspect the movement of science into the education of health care practitioners and their resulting practice. We then describe what many have referred to as a narrative turn in several disciplines and professions. This leads us to a discussion of the place of story in current models of the patient–practitioner relationship. These initial chapters contain the most abstract and theoretical material of the book. One could access other parts and chapters of the book without considering this material and still understand the content. However, we encourage readers to consider the arguments of Part 1 so that they can apply the content of the remaining chapters to their practice in an informed way, rather than as simply another “technology” for practice.

CHAPTER 1

Medicine, Medical Practice, and Knowledge

There is . . . no essential medicine. No medicine that is independent of historical context. No timeless and place-less quiddity called medicine.

Arthur Kleinman (1: 23)

. . . the doctor, by virtue of accepting science so totally, creates a total imbalance, forgetting the art of healing, forgetting the art of engagement, forgetting the art of listening, forgetting the art of caring and ceasing to invest time with the patient. So I believe that medicine has lost its human face.

Bernard Lown (2: 1)

• A CLINICAL STORY

• THE MAKING OF MODERN MEDICINE

• SCIENCE, PARADIGMS, AND MEDICINE

• THE LEGACY OF BIOMEDICAL MEDICINE

• BIOMEDICINE: COMPETING VIEWPOINTS

KEY IDEAS

• Practices and values of modern medicine have their foundation in the social and intellectual contexts of the mid-nineteenth century.
• US medicine during the nineteenth century was heavily influenced by Scottish and French clinical medicine and German medical science.
• US physicians returning from training in Germany believed that science was the key to medical progress as well as reforms in medical education.
• Medicine embraced a form of seventeenth-century science built upon the work of Bacon, Descartes, and Newton, and based on empirical observation, material mechanisms, reductionism, determinism, and dualism.
• This seventeenth-century paradigm evolved into the dominant system of thought that propelled future medical scientists and physicians to act as objective observers striving to eliminate subjective features of their practices.
• This stance laid the foundation for a biophysical approach to the patient.
• Biomedicine fosters an approach to suffering that values increasing levels of abstraction and distance from the lived experience of the sufferer – an approach that is abstract, context free, and impersonal.
• The critique of biomedicine strives to reconnect mind with body and return the patient as a reflecting and reflexive self to the center of the clinical relationship.

A CLINICAL STORY

“Get ready to listen to his complaining”, I had told the medical student assigned to the nephrology service that month. His left hand was now so awkward, the patient would tell us over and over again, ever since the surgery. He was an otherwise fairly active 58-year-old African-American man whose longstanding poorly controlled hypertension had damaged his kidneys irreparably. In preparation for the eventual hemodialysis treatments that would keep him alive, I had referred him to a vascular surgeon. He would need an arteriovenous fistula – a surgically created connection between the artery and vein in his wrist – so that the artery’s high-pressure, high-flow circulation would be diverted into one of the veins draining the hand. That surge of blood flow would, over a number of weeks to months, allow the vein to blossom into a very large and tough blood vessel from which the blood, through large needles, could be delivered to the artificial kidney and filtered in the dialysis process.

Sometimes this alteration of the blood supply to the hand can harm the tiny nerves which activate the functions of the hand. Occasionally the neurologic impact is quite disabling, but more often the consequences are subtle and clinically insignificant.

So it was, it seemed to me, in this man’s case. Despite his unrelenting bemoaning of the post-operative results, no significant dysfunction could be detected by my careful objective neurologic examination. More importantly, I argued, the “little bit of clumsiness” that so upset him was on his left, non-dominant hand, after all. I was incredulous at his persistence, and what seemed to me to be the whining of a man who failed to appreciate that I was offering him life-saving treatments designed to add years to his life. The fact that he was incapable of seeing this “bigger picture” had actually begun to annoy me.

During this hospitalization for an unrelated problem, he continued to focus our attention on his “ruined” hand. He could not be consoled by our pointing out that his hand clearly appeared to be acceptably functional by our examinations. So when the medical student joined the team, I felt the need to prepare him for my patient’s perseverations. “Get ready to listen to his complaining”, I had instructed.

Three days into the hospital stay, outside of his room, I was reviewing his progress with the residents on the team in anticipation of his discharge. One of the residents jokingly asked whether I thought it was safe to discharge him with such a significant disability in his hand. Would he be able to care for himself? How would he take his medicines? Perhaps we should consider nursing home placement. They, too, were fatigued by the chorus of his complaining. As the chuckling waned, the medical student came out of the patient’s room. The question he then asked me is one which continues to haunt me. “Did you know”, he queried, “that this patient is a pianist?”

As every physician does throughout a career, I presume, I carry certain patients with me, in the pockets of my white coat. These are patients who, for better or for worse, have transformed me through my experiences with them for all of my subsequent medical work. This man is one such patient, one for whom I have never forgiven myself.

I am inclined to believe that had I been aware of this man’s piano playing, and furthermore of how important it was to him, I would have encouraged him to consider methods of dialysis that would have allowed him to avoid such a disabling operation on his arm. Had I made assumptions about this man, assumptions which grew from my own biases, my own ignorance? The life I was offering him was a compromised one, and it was a compromise that didn’t have to be. This patient and his medical student remind me of the importance of heeding one’s own advice. “Get ready to listen to his complaining”, I had warned.

JZ

This is not an atypical story of an encounter between a patient and a doctor. What is remarkable about the encounter is the coexistence of two stories – the doctor’s and the patient’s story – one dominant and active, the other silent and passive. What accounts for the different character of these stories? Why is one story privileged over the other? What is the outcome of this situation for both patient and doctor? What does each person bring to the telling of and listening to the patient’s story that influences their interpretations?

One way to understand what transpired between patient and doctor is to examine the intellectual and social contexts of the tasks which this doctor brings to the encounter. The physician needs to gather information about the patient’s condition in order to provide care. In this encounter, there exists the possibility of attending to multiple forms of knowledge in performing those tasks, including the biophysical information gained from the medical history, physical exam and laboratory tests, the patient’s story of his lived experience with a less than fully functional hand, and the meaning of that condition for his sense of self. In this encounter, one kind and source of information is valued over another. Biophysical information, perceived as “objective” and coming from physical touch and laboratory data, screams while information perceived as “subjective”, the patient’s illness story (his experience of suffering), is silenced. Why does the clinician, seeking to serve the best interests of the patient, perform in this manner? To examine these questions we look to the historical and social contexts which frame the development of the physician’s profession and the conduct of his actions.

THE MAKING OF MODERN MEDICINE

We begin with a brief look at the rise of the medical profession in the USA. Others have carefully documented and interpreted this history, and for our purposes we need only rehearse the highlights of their arguments (1, 2, 3, 4 and 5). We rely on the excellent original work of Paul Starr, Kenneth Ludmerer, Roy Porter, and Helen Dingwall for our story of this period. We recognize that within any given period there are multiple and often competing idea systems at play. In this chapter we try to represent the dominant patterns of thought. Readers who are interested in this complex history are encouraged to examine the materials listed in the “Further Activities” section at the end of the chapter.

The establishment and ascendance of any profession is the outcome of a struggle for cultural authority and upward social mobility. In speaking about this phenomenon with respect to the medical profession, the historian Paul Starr (3) suggests that professional movements are explained by factors internal to the profession, such as practitioners’ ability to generate new knowledge, and their personal and economic ambitions, and factors external to the profession, namely broad changes in culture and society. For our purposes, we bracket the period from the eighteenth through to the early twentieth century, a particularly important period for the formation of the medical professio...

Table of contents

• Cover
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• Foreword
• About the Authors
• Acknowledgements
• Introduction
• PART 1 Historical Context, Genealogy, and Current Viewpoints
• PART 2 Professional Performance Situations and Narrative Importance
• INTERLUDE: The Death of Ivan Ilyich
• PART 3 Narrative Competence and Its Outcomes
• PART 4 Personal Perspectives on Narrative in Health Care
• Afterword
• Glossary
• Author index
• Subject index