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Holding your breath the lived experience of supplemental oxygen therapy

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Title:
Holding your breath the lived experience of supplemental oxygen therapy
Creator:
Earnest, Mark Allen
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Denver, CO
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University of Colorado Denver
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English
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216 leaves : ; 28 cm

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Subjects / Keywords:
Oxygen therapy ( lcsh )
Lungs -- Diseases, Obstructive ( lcsh )
Anoxemia ( lcsh )
Anoxemia ( fast )
Lungs -- Diseases, Obstructive ( fast )
Oxygen therapy ( fast )
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bibliography ( marcgt )
theses ( marcgt )
non-fiction ( marcgt )

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Bibliography:
Includes bibliographical references (leaves 210-216).
Thesis:
Health and behavioral sciences
General Note:
Department of Health and Behavioral Science
Statement of Responsibility:
by Mark Allen Earnest.

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|University of Colorado Denver
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|Auraria Library
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All applicable rights reserved by the source institution and holding location.
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ocm47848636
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LD1190.L566 2001d .E37 ( lcc )

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Full Text
HOLDING YOUR BREATH
THE LIVED EXPERIENCE OF SUPPLEMENTAL OXYGEN THERAPY
By
Mark Allen Earnest M.D.
B.A., Wake Forest University, 1986
M.D., Vanderbilt University, 1990
A thesis submitted to the
University of Colorado at Denver
in partial fulfillment
of the requirements for the degree
Doctor of Philosophy
Health and Behavioral Sciences
2001


2000 Mark Earnest
All rights reserved.


This thesis for the Doctor of Philosophy
Degree by
Mark Allen Earnest
Has been approved
By
cI
Date


Earnest, Mark Allen (Ph.D., Health and Behavioral Sciences)
Holding Your Breath The Lived Experience of Supplemental Oxygen Therapy
Thesis directed by Associate Professor Kitty Corbett
ABSTRACT
For individuals with chronic obstructive pulmonary disease (COPD) and hypoxemia,
supplemental oxygen therapy offers many well-documented benefits for physical and
neuropsychiatric function. Despite these benefits to therapy, no prospective trial has ever
demonstrated an improvement in quality of life (QOL) as a result of oxygen therapy, and
adherence to therapy is low.
Twenty-seven individuals with hypoxemic COPD underwent semistructured interviews,
exploring their experiences with supplemental-oxygen therapy. The interviews were analyzed
qualitatively in a process informed by grounded theory methodology.
Adapting to supplemental oxygen use is a complex and difficult process. Individuals
using oxygen seek to optimize their status in terms of four management domains: physical
management, symptom management, health management, and social management. While oxygen
therapy may improve function in one domain, it may limit function in another. Ultimately the
manner in which the individual uses their oxygen is a reflection of how they value the relative
importance of each management domain. For most individuals, the process of establishing a
pattern of oxygen use occurs overtime and is shaped by many factors including illness events,
social interactions, medical knowledge, and a variety of other personal experiences which affect
their perceptions of various factors that promote or impede oxygen use. Over time, many
respondents moved from part-time to full-time oxygen use, based on their evolving sense of their
own needs. For most respondents, physicians play a small role in this process as most
participants struggled with oxygen alone without seeking outside help or clarification.
Adherence to supplemental oxygen therapy is poor because oxygen therapy is difficult to
use and difficult to integrate into daily life. Understanding the processes involved in negotiating
IV


the challenges of supplemental oxygen, may allow physicians to improve adherence and quality
of life by helping them facilitate these processes for their patterns.
This abstract accurately represents the content of the candidates thesis. I recommend its
publication.
Signed_
felk CJtUT'
Kittvl Corbett


DEDICATION
I dedicate this thesis to Pat and Zellie Earnest, my parents, who taught me to listen.


ACKNOWLEDGEMENTS
Among the many who deserve thanks for their help and steady encouragement, a few stand
out. Thanks to John Steiner colleague, friend, and mentor whose leadership and vision
created a place where I could start this process, and whose open door, ready ear, and wise
advise helped me maintain energy and direction when life would pull me otherwise. Thanks
to Kitty Corbett for her patient guidance, instruction, and sage advice on both the nuts and
bolts of the process, and on the art of observing. Her humor and twinkle, and the
affectionate gaze she turns on this messy mass of humanity are an inspiration and needed
reminder to step back from time to time and smile at it all. Thanks to Craig Janes and the
rest of the Health and Behavioral Science faculty for introducing this clinician to the view
from the another side I am forever a better physician and a better man for your efforts.
Thanks to Dr. Tom Petty, a pioneer in pulmonary medicine, who gave generously of his time
and expertise in reviewing this work. To Drs. Richard Martinez and Jean Kutner, for
lending me your critical eyes and ears: thanks. Thanks to Fred Wamboldt for all the help and
advice and to Lori Crane for sticking with this and wading through the results. To all the
participants who let me into their lives and homes and shared their stories. I offer my
gratitude. Finally, thanks to my wife Julie, who made room in our relationship for this work
- an often noisome interloper.


CONTENTS
Figures.........................................................xi
Tables..........................................................xii
CHAPTER
1. WHITHER OXYGEN? ..............................................1
2. THE NECTAR OF THE AIR BACKGROUND AND HISTORY
OF OXYGEN AND ITS USE AS A TFIERAPEUTTC AGENT................12
3. HEALTH AND ILLNESS BEHAVIOR THEORY FROM THE
SOCIAL SCIENCES..............................................30
4. METHODS......................................................47
The Research Question.....................................47
The Sample............................................... 47
Study Measures............................................50
Qualitative Analysis......................................52
Trustworthiness...........................................58
Limitations...............................................60
5. THE SAMPLE...................................................62
Demographic Characteristics...............................62
Pulmonary and Psychological Status........................64
6. THE DIAGNOSTIC MOMENT........................................70
The Threshold of Illness..................................70
The Diagnostic Moment.....................................75
7. THE PHYSICIAN'S ROLE.........................................80
8. PATTERNS OF OXYGEN USE.......................................87
Part-Time Use.............................................89
Full-Time Use.............................................92
9. RECKONING....................................................95
Four Domains of Management................................96
viii


Initial Reckoning.................................................99
Primary Reckoning................................................101
Final Reckoning..................................................102
Reckoning The Stakes............................................103
The Stakes of Primary Reckoning..................................105
The Stakes of Final Reckoning....................................119
10. PROMOTERS AND BARRIERS TO OXYGEN USE................................124
Barriers to Oxygen Use...........................................125
Stigma and Shame.........................................126
Perceived Social Pressures...............................133
Fear of Dependency Of Crutches and Addiction...........135
The Physical Limitations of Oxygen.......................142
Side Effects.............................................145
Health Beliefs...........................................146
Self-Consciousness.......................................146
Promoters of Oxygen Use..........................................148
Health Beliefs...........................................148
A Medical Event..........................................149
Biomedical Advice........................................152
Difficulty with Usual Tasks..............................152
A Sense of Progression...................................153
A Perceived Emergency The Trauma of Respiratory Panic..153
Adapting.................................................156
Becoming Shameless.......................................158
Normalizing..............................................165
A Sense of Efficacy and the Perception of Need...........166
Pulmonary Rehabilitation.................................167
Overcoming Tapping Personal Strength...................169
11. STATES OF INTEGRATION...............................................171
Integrated.......................................................172
ix


Truce.....................................................173
Defeat....................................................174
12. STORIES FROM THE FIELD EXAMPLES OF
INTEGRATION..................................................176
Integration One for the Gipper A Competitors Guide to Victory.176
Integration Learning to Win Becoming a Victor.........178
Truce The Limits of Life on My Own Terms................179
Defeat Giving Up........................................183
Defeat The Drowning Man.................................185
13. ON COMPLIANCE AND ADHERENENCE................................190
14. SO WHAT? RECOMMENDATIONS FOR CLINICAL PRACTICE...............200
Explain the Medical Benefits of Oxygen....................201
Address Its Permanence....................................201
Recognize the Difficulties in Using Oxygen.........................202
Address Concerns about Dependency and Addiction....................203
Emphasize the Benefits.............................................203
Optimize Equipment.................................................204
Consider Oxygen Like Any Other Prescription........................206
Consider a Referral to a Pulmonary Rehabilitation Program..........207
Revisit Oxygen Frequently..........................................209
REFERENCES.......................................................................210
x


FIGURES
Figure
6.1 The Trajectory of Illness A Patients View...............................76
9.1 Social Domains in Reckoning................................................107
XI


TABLES
Table
5.1 Description of Study Participants.........................................67
5.2 Pulmonary Status of Sample...............................................69
5.3 FEV1 Measures............................................................69
5.4 Selected Measures from the Brief Symptom Inventory........................70
xii


CHAPTER 1
WHITHER OXYGEN
I had been in practice only a few months when Ms. L. walked into my clinic. She was 60
years old and had worked all of her adult life. Alone she had raised her three children to
productive adulthood after her husband left. She had been healthy her whole life but
confessed to a single embarrassing habit 40 years spent smoking a pack and a half of
Winston cigarettes every day. Six months earlier, she had been diagnosed with emphysema
by my predecessor. At that time she was told two things: she had to stop smoking and she
needed to wear supplemental oxygen around the clock. Six months had passed and she still
struggled with both recommendations.
The specifics of her life had changed little in the months since the diagnosis. Work
consumed her weeks, weekends were reserved for what recreation and family time she
allowed herself. Shed tried to make changes. She had cut down to a half a pack per day,
but couldnt stop. She used the oxygen most of the time, but confessed that the reason she
was here was that she wanted to stop using it. She had thought about just quitting on her
own, but she was fearful of quitting without getting some medical advice. Dr. S had told that
she needed it and that was the only reason she still used it at all. She had wanted to talk to
Dr. S about quitting but had never really gotten around to it. Now Dr. S had moved and I was
in her place. Ms. L. had come in to ask me one question: Could she stop using oxygen?
1


Ms. Ls question was a more difficult one than it at first appeared. It occurred to me in that
moment that I was being asked to give advice I never thought I would have to give. Here was
a woman who seemed to have a problem with a simple remedy. The saturation of oxygen in
her blood was low, it could be raised to a normal level by breathing supplemental oxygen.
The extra oxygen should lengthen her life and make her feel better. How could she not want
to use it?
As a medical student I had heard that there were certain characteristics of a great disease
from a physicians perspective. First, the condition must cause the patient symptoms curing
an asymptomatic patient is far less gratifying. Second, it must be difficult to diagnose the
rewards of scooping the phalanx of physicians who preceded you are too obvious to
enumerate. Third, the disease must be severe enough to threaten death or disability if not
diagnosed. Fourth, the condition must be curable, or at least very treatable. Hypoxia might
at first seem to meet these criteria. Sufferers are usually very symptomatic and the ultimate
source of their symptoms may not be readily apparent. The condition can be severely
debilitating, even fatal. Hypoxia seems treatable as well. If the condition is indeed low
oxygen saturation in the blood, then this condition can be corrected by the addition of
supplemental oxygen.
This thinking is simplistic of course. Hypoxia is not a disease in and of itself, but rather a
proximate manifestation of any of a number of disease processes. Whether the condition is
acute and potentially completely reversible, such as pneumonia, or chronic, progressive and
?


incurable, like emphysema, the presence of hypoxia is a marker for the severity of the illness.
If the condition is so advanced as to cause hypoxia, there is significant organ dysfunction and
the condition is by definition, severe. Yet, while hypoxia is only a marker of an illness
process, it is a reversible marker. The underlying process may not change, but the deficit
which has resulted from the condition, a deficit of oxygen in the bloodstream, is reversible
merely by replacement.
In the world of modern medicine, it is hard to avoid this simple determinism. If there is an
excess, remove it: if there is a deficit, replace it, and much will be made better. In some ways
our thinking is no different from the dark days of bloodletting, only we are now much more
sophisticated in what we add and what we take away. My training told me that Ms. Lf s
condition, emphysema, was incurable and that her lungs were permanently damaged. My
instincts told me that for her there was hope. Many of her symptoms were the result of an
oxygen deficit, which should be relieved by replacement. After six months of using oxygen,
how could she not know this? By what calculus were the obvious benefits of this therapy not
worth the struggle?
In my conversation with Ms. L., I was a strong proponent of continuing the oxygen therapy.
Her saturation at rest was three to four percentage points below normal. With a trivial
amount of oxygen, it was normal. Going without it would be hard on her heart and might
cause it to fail. She would certainly live longer if she used it, but more than that, she would
feel better. She would sleep better, think better, walk farther, and generally feel more vital if
she used oxygen than if she did not. Of these things I was certain.


Ms. L was not the type to argue and took what I said with nervous resignation. She certainly
was not anxious to hasten her death or cause her heart to fail. She lingered over my
enthusiastically pro-oxygen pitch with a steady, wordless nod. as if agreeing, yet her posture
said she was still weighing the options.
"Ultimately," I said, its your decision. You have to decide if you want to use it. My job, as
I see it, is to make sure you have enough information to make that decision."
She asked a few more questions for which I had only vague answers. If I dont wear it, how
long will it be before I get really sick? How long before I might die, if I dont wear it?
Her last question was less difficult: Would you still be willing to be my doctor if I dont use
the oxygen? The answer was an easy yes.
No decision had been made when she ieft my office that afternoon. It seemed like such a
straightforward choice that I gave it little thought. Why wouldnt she choose fewer
symptoms, better health, and a longer life? Certainly it was the choice I would make under
the same circumstances, wasnt it? A week later, she called to say she had decided not to use
the oxygen.
That our patients fail to heed our advice is an old conundrum in medicine. Countless studies
over the last 40 years have repeatedly demonstrated that 30-50% of our patients will not take
the therapy' we prescribe, as we prescribe it. (Steiner J.F. & Earnest M.A., 2000)The more
4


complex the recommendations, the less likely patients are to follow our advice. Medical
science has struggled to explain it. How could they not follow such a logical course of
behavior? How could they not want to cure X. or prevent Y, or reduce Z, when the benefits
are so clearly elucidated?
The struggle to explain is seen also in the struggle to describe. Compliance was for years
the term used to describe the behaviors of those who heeded their physician's advice. While
still commonly heard in conversations between medical professionals, compliance and its
counterpart noncompliance" have fallen out of favor as legitimate nomenclature in the
medical literature (Steiner J.F. et al., 2000). The implication that the patient should yield or
acquiesce to the recommendations of their physician was deemed too paternalistic, with
excessive attention to the authority of the physician. The term adherence" has largely
replaced compliance. The term represents progress by relocating the locus of control with the
patient, but this term still restricts the description of health promoting behaviors by describing
the behaviors relative only to their concordance with the recommendation of health care
professionals.
In hindsight it is clear to me that Ms. L. struggled in part with whether she should be
compliant. Her concern with whether our relationship would continue if she chose to
reject my advice reflects that her perceived need to bend to her physician's recommendations
was a part of her struggle. Her concern over the health consequences of her decision reflect
her struggle with whether or not she should adhere to my recommendations, to logically
reckon with the objective medical risks of not using oxygen versus the described benefits of
5


using it. Yet clearly these terms and the elements of her decision they describe (the need to
conform to physician authority and the need to make a decision that is logicallly consistent
with the information provided by biomedical science regarding what is best for her health) do
not reflect all the elements that went in to making her decision. If these eleme=nts alone fully
described her struggle with the decision in its entirety, then the reasoning that resulted in her
final decision would be more transparent. They are only the elements of the decision that are
apparent from the perspective of her physician in a standard clinical discussiom a doctor-
centric view. Clearly her calculus included variables that were not apparent too me, her
physician.
Most discussion and study of compliance and adherence are relative to medication
taking. There are now 50 years of literature describing when, and how often, and under what
circumstances, patients take or fail to take their medications. It Is from these studies that
most statistics regarding compliance and adherence are derived. How germeralizable
these statistics are to the use of oxygen could be debated. Medication taking is a simple
behavior that must occur only a few times a day at most. It is a behavior that ccan be
performed in private, with no audience at all. While deciding whether or not too take a
medication may be a complex and multifaceted process, the act of taking the medication is
not. Regular medication taking requires an alteration of the daily ritual and perrhaps some
organizational skills, but little else. Oxygen is a different matter.
At its best, oxygen therapy is cumbersome. The lightest, most portable equipment weighs
several pounds, is bulky, and has to hang from the shoulder like a large, hard, rnon-
6


compressible purse. The other portable option is a larger, heavier, and bulkier tank of
compressed oxygen that requires its own wheeled stroller to be mobile. Delivering the
oxygen to the lungs requires a length of tubing running from the tank, wrapping around the
face, and ultimately blowing die gas into the nose. The user is in this way tethered to the
oxygen source, his or her movement inhibited by the size and bulk of the equipment.
Oxygen cannot be used inconspicuously. It is always a conscious and very public event.
Where a pill can be taken once and forgotten, the equipment involved in using supplemental
oxygen is itself a constant reminder, to the patient and to others, of the illness which
necessitates its use. Oxygen, either physically or aesthetically, will in some way alter every
activity in which the patient engages while using it.
These aspects of her experience with oxygen were not a part of my discussion with Ms. L. It
didnt occur to me at the time to ask her about it and apparently, it didnt seem appropriate or
comfortable to her to bring it up w'ith me. Clearly in her eyes, the therapy I recommended to
her was not worth it. Clearly the benefits I saw for her of symptom control, better health, and
longevity were trumped by some side effects that were not apparent to me. Clearly what I
saw as an uncomplicated and straightforward good did not appear the same when viewed
from her perspective. It was only in trying to reconcile this gaping disparity between the
choice she made and what appeared to me to be the logically obvious choice that the
difficulties of using oxygen became apparent. Yet just as I had in my own mind created
obvious reasons for using oxygen, I was now creating the reasons for not using it based not
on my own experience or Ms. Ls, but on my own exercises in empathy and imagination.
7


Could the conclusions I drew from this be any more accurate or valid than the inadequate
conclusions I had drawn before?
Once I decided to have the conversation with Ms. L regarding the difficulties she experienced
with oxygen, it seemed too late. I had played my hand as the oxygen advocate and she was
continually responding to it. The pressure to "comply" with my recommendations seemed to
reduce her ability to talk about the difficulties she had with them. Her reluctance to voice her
concerns seemed equivalent to a reluctance to blame me for the unpleasantness of the
experience. She would acknowledge that it was hard or that it got in the way, but that
was about as far as the conversation went. I realized that to get a true picture of what it was
like for Ms. L to use the therapy i had prescribed for her, I had to be someone else. I could
not be her physician. I could not be the one who had spelled out so clearly why she should
use it.
It was the clinical conundrum of this single individual that brought oxygen therapy to my
attention. As a physician, I prescribed it frequently, but how well did I understand its costs
and its benefits? 1 read the available literature and found a sizeable canon of research
testifying to the benefits of oxygen therapy. Interestingly, while there was a long list of
physiological benefits outlined in these studies, there were no data to support that people felt
their quality of life improved as a result of therapy. Perhaps Mrs. L was more representative
of oxygen users than I first supposed.
8


I set out to study this question, not with a hypothesis to prove but with a simple question,
why? If oxygen was so effective at treating the physical consequences of hypoxemia in
emphysema, why did people like Ms. L not appreciate its benefits? Why didnt they feel
enough better on oxygen to make its use worthwhile? My goal was to let oxygen users tell
their stories and answer that question themselves. I approached them as an interested
researcher, not a physician. When possible, I met with them in their homes. I asked some
questions, for clarification, or to query particular parts of their experiences, but largely I
listened and recorded. (For a detailed description of the process, see chapter four on
methods) Then I listened again and again to their words. What did oxygen therapy mean to
them? How did it affect their lives? In what ways did it help them and in what ways did it
hinder? I also set out to examine oxygen from a broader cultural perspective as well. How is
it perceived in society at large today? Where did those perceptions come from?
The results of that process are in the pages that follow. Chapter One is a brief history of our
understanding of breathing and of oxygens role in the process of respiration, from ancient
times to the modem use of oxygen for hypoxemic medical conditions. Chapter Two
describes the contribution of the social sciences to the processes of biomedicine. This work
represents the theoretical foundation on which much of the rest of this study is built. Chapter
Four describes in detail the methods used in this study.
Chapters Five through Twelve document my findings. Chapter Five describes the
participants in this study. The processes of acquiring a diagnosis and identifying oneself as
ill are described in Chapter Six. Physicians are intimately involved in diagnosis and in
9


prescribing treatments. Chapter Seven describes the roles physicians played in the
experiences of the participants in this study.
Each participant in the study had a unique experience with oxygen, yet pieces of that
experience were shared by everyone who used oxygen. One common element was the
process of reckoning. Described in Chapter Eight, reckoning is the process of weighing the
costs and benefits of oxygen therapy to arrive at an optimal formula for its use.
During the course of the study, a long list of circumstances and experiences emerged which
affected the participants use of oxygen. In Chapter Nine, I discuss these factors and their
impact on oxygen use among the study respondents.
The goal of any medical intervention should be an improved life. An oxygen prescription
changes life for certain. Not all respondents considered these changes improvements. In
Chapter Ten I describe the outcome or final state of these individual oxygen users.
In trying to tell a story that is universal to oxygen users, I risk a description that is too
generic, one that lacks a face. Chapter Eleven was written as a remedy to that. In this
chapter I have told the stories of several individuals and their journey with oxygen therapy.
They are included to present a personal aspect of this work that might be lost otherwise. No
matter how similar two experiences are, if two different people are involved, the two
experiences will remain unique. This chapter is here to illustrate that point.
10


In his book, The Illness Narratives. Arthur Kleinman makes the point that isolation is one of
the most potent sources of suffering. In the course of conducting this study. I was repeatedly
struck with how much of the struggle these people described occurred in isolation. They
viewed their suffering as their own unique burden, rarely sharing their experiences with
anyone. But isolation is a curable condition. My hope is that this work will shine some light
in that dark corner that health care providers, by hearing the experiences of these people,
will have their eyes opened to the challenges they face. If the burdens of using oxygen are
recognized before it is prescribed, then hopefully all involved parties patients, physicians,
family members, and friends can enter the process fully informed, with eyes open. Perhaps
then, a conversation can start that will end the silence and minimize the painful and isolating
aspects of oxygen therapy.
11


CHAPTER 2
THE NECTAR OF THE AIR
A HISTORY OF OXYGEN AS A THERAPEUTIC AGENT
Oxygen is the element most essential for life. All human beings will die without it in a matter
of a few minutes. Despite the fundamental role oxygen plays in life, it was not until late 18Ih
century that oxygen was at last described and its role in respiration elucidated. Nevertheless,
the ideas of breathing and of air as essential components of life date back to antiquity.
Some Native Americans believed that a creature's life force or spirit moved in their breath.
Hunters and warriors would wait beside their kill to breathe its last exhalation and take the
life force of the vanquished foe or game into themselves (Personal communication, Farlan
Cuyate).
The breath of life is a concept that can be found in the Bible, in ancient Sumerian writings,
and in Egypt as well (Jain & Fischer, 1989). While the physiology of breathing was fanciful,
the concept of breath bringing life was clearly present in these early writings. For example,
the Egyptian Ebers papyrus describes respiration in the following way.
...there are four vessels to his two ears together with the (ear) canal, two on the right
side and two on his left side. The breath of life enters into the right ear, and the
12


breath of death enters into the left ear; another lection; it (i.e. the breath of life) enters
into the right side, and the breath of death enters into the left side (Dudley, Martin,
Masuda. Ripley, & Holmes, 1969).
Ancient Chinese medicine emphasized the concept of balance. Health was maintained
through the proper balance of different constituents. Breathing properly was essential to
maintaining balance. They believed that the lungs were the dwelling of the animal spirits or
inferior souls." Respiration was less an act of physiological necessity than a metaphysical
one. In breathing, one drew into the body the great spiritual soul of the universe, where it
was transformed into the substance of the human soul (Dudley et al., 1969).
Ancient Indian texts also document the idea that breathing was essential to life and wellness.
The Charaka describes respiratory physiology and respiratory illness in similar detail to the
Egyptians.
...of the ducts that bear the life breaths, the root is the heart, and the great duct
(trachea). Beholding a person inhaling and exhaling long breaths, or breathing
obstructively, or breathing furiously or drawing short or incessant breaths, or
breathing with noise or pain, the physician should understand that those ducts of man
that bear the life breaths have become disordered (Dudley et al., 1969).
13


These Indian texts describe respiration and the idea of an essential component to air most
poetically. They also link fire and life' in their descriptions an association that was made in
many other ancient traditions.
...after coursing through the interior of the lotus-like heart, it goes out through the
throat to drink of the outside air and after taking up the nectar of the air, it enters the
body again to nourish the whole body, and to keep up the digestive fire (Dudley et
al., 1969).
The Greeks named this vital essence in air. They called it pneuma, and most Greek
philosophers from Hippocrates to Plato to Aristotle, and ultimately to Galen, tried to define
and elucidate its nature (Dudley et al., 1969; Jain et al., 1989).
Hippocrates perhaps came closest to describing what we now know as oxygen and its role in
the human body. His description of the symptoms associated with a lack of breath, even to
the modern ear. sounds much like a description of hypoxemia.
For when a person draws in air by the mouth and nostrils, the breath (pneuma) goes
first to the brain, then the greater part of it to the internal cavity, then part to the
lungs, part to the veins and from them it is distributed to the other parts of the body
along the veins; and whatever passes to the stomach cools and does nothing more;
and so also with regard to the Jungs. But the air which enters the veins is of use to
14


the body (by entering the brain and its ventricles) and thus it imparts sensibility and
motion to all the members, so the man loses his speech and intellect and the hands
become powerless and are contracted, the blood, stopping and not being diffused, as
it was wont; and the eyes are distorted owing to the veins being excluded from the
air; and they palpitate; and froth from the lung tissues by the mouth (Dudley et al.,
1969).
Successive generations of Greek philosophers each added their own interpretation of
respiration and the function of pnuema. Plato believed that it cooled the heart and helped
dissipate animal heat. Aristotle believed respiration had a cooling function as well. Galen
departed from this tradition and proposed that pneuma was essential for the creation of
animal heat. He drew the analogy of a flame in a perforated gourd. The flame could not burn
without a certain quality in the air. Similarly, men could not live without it either. He
observed the waste produced by a flame and proposed that exhaling expelled the waste of the
heat generated by the body. As with the rest of his writings. Galen's views on respiration
held sway for the next millenium. Periodically, a writer would emerge to refine his
perspective, but none took hold and none changed thinking enough to influence thought in a
lasting way (Dudley et al., 1969; Jain et al., 1989).
In modem Western thought, science and spirituality are often at odds. Science threatens faith
and faith is seen as an opponent to scientific objectivity. Though often antagonistic,
evolution in religious or scientific thought often forces a rethinking of the other. It is perhaps
no coincidence that development of scientific thought in the European Renaissance occurred
15


concomitantly with the Protestant reformation, a radical re-interpretation of Christianity and
its spiritual truths. These two movements can both be seen in the writings of Michael
Servetus, a 16th century cleric with a strong interest in science who was burned at the stake by
Calvin. He equated respiration to inhaling the divine spirit of God, and in doing so, comes
very close to describing the oxygenation of hemoglobin. In his description however, the
blood is saturated with the Holy Spirit rather than oxygen.
Indeed, the fact indicates that the divine breath is in the air which the spirit of the
Lord fills, and the spirit was formed from the mixing of the blood with air in the
lungs (Dudley et al., 1969).
The systematic, scientific untangling of oxygens role in human respiration would began a
century later through the work of the great British chemist Robert Boyle. In 1660, through a
series of experiments, Boyle observed that birds and mice died when the air was evacuated
from their container. Of his observations he wrote:
Perhaps... there is some use of the Air which we do not yet so well understand, that
makes it so continually needful to the Life of Animals... We may suppose that there
is in the Air a little vital Quintessence... which serves to the refreshment and
resaturation of our vital spirits, for which use the grosser and incomparably greater
part of the Air being serviceable, it need not seem strange that an Animal stands in
need of almost incessantly drawing in fresh Air (Dudley et al., 1969).
16


Boyle's quintessence came to light over a century later in the laboratory of Joseph Priestly.
Priestly liberated oxygen by heating oxide of mercury with light concentrated through a
magnifying glass. He found that the gas produced by this experiment caused flames to bum
brighter and created an adequate atmosphere to sustain a mouse. He failed, however, to
realize fully the implications of his findings. He erroneously interpreted his observations
according to the then popular theory of phlogisticated air. In this theory', phlogiston was a
material released by all combustible substances. He called the gas he discovered
dephlogisticated air (Dudley et a!., 1969).
It was the French chemist Lavoisier who ultimately demonstrated the chemical nature of
Priestly's discovery. He showed that combustion and respiration were analogous processes
and he named Priestly's gas oxygen because of its tendency to create acids when combined
with other elements. (Dudley et al., 1969)
Physicians quickly seized Lavoisier's discovery and proposed that many diseases were the
result of a lack of oxygen. Most notable was Thomas Beddoes. founder of the Pneumatic
Institute at Clifton in England. He proposed that many diseases could be cured by placing the
patient in a factitious atmosphere supplemented with Lavoisier's oxygen. He claimed
success using oxygen in the treatment of heart disease, leprosy, asthma, dyspnea, opium
poisoning, and venereal diseases. As the toxicity of oxygen became more apparent, this
enthusiasm waned and Beddoes' hopes for oxygen faded, but not before his institute
discovered the beneficial uses of nitrous oxide (Dudley et al., 1969).
17


The need for oxygen in the human body was definitively demonstrated in a series of balloon
experiments in the late 19Ih century. First Glashier and Coxwell went to 29,000 feet, where
Glashier lost consciousness. Coxwell managed to bring the balloon down and both survived.
Later three French balloonists attempted the same, but with supplemental oxygen. Two of
them died in the attempt the first deaths purely from anoxia. These flights inspired Paul
Bert, the French physiologist, to study the effects of decreased atmospheric pressures on
humans. In 1878 he published a book which showed that the principle effect of altitude on
human beings was in lowering the partial pressure of oxygen in the body. Further, he
specifically proposed that the physical"and mental dysfunction that occurred at altitude was a
result of the lack of oxygen in the body (Dudley et al., 1969).
It is not surprising that in the years after oxygen was first refined, its use became widespread.
In the early 20lh century, an era in which few effective therapies were available, oxygen
inhalation had again become widely popular in medical circles as empirical therapy for a
variety of ailments. Physicians often provided oxygen in their offices (Dudley et al., 1969).
Support for oxygen therapy was by no means uniform. In medical circles, there was much
discussion around the utility of oxygen in these treatments and many questioned its efficacy.
Most therapeutic trials with oxygen were short, and in all likelihood too brief to be effective.
No less an authority than Sir William Osier described the use of oxygen in the treatment of
pneumonia thus:
18


The value of the administration of oxygen (for pneumonia) is doubtful. If used, it
should be given very slowly and through a funrnel held over the mouth and nose
(Osier, 1912).
The debate over oxygen's use did not dampen the enthiusiasm for the gas in some circles.
The idea that oxygen was a miracle cure, with fountain j-of-youth like qualities crept into the
public imagination. The Indians' "nectar of the air ha>_d been discovered, and was available
to those who could pay. Parlors opened which provided this oxygen at a fee to patrons
(Dudley et al., 1969).
This enthusiasm for oxygen is not hard to understand. ; Scientific discoveries have a tendency
to be extrapolated. Truth at the level of a test tube or ceell is often generalized to the organism
as a whole. The result is often a small amount of scienoce blended generously with belief to
create a broadly constructed empirical model of health 1 benefit. There are numerous
examples. Once the essential nature of vitamins as miacronutrients were described, regimens
for large doses were developed. The function of the nu trient cannot help but be in part
defined by characteristics of its deficiency state. If hurman function can be improved in these
particulars by replacing the absence of the substance, thnen perhaps those characteristics can
be enhanced further by taking still more. Thus, in some ways, early beliefs about vitamin C
may have been constructed from the traits of scurvy whtich it corrects. Carnitine plays an
essential role in energy metabolism at a cellular level. There is now a huge business in
carnitine supplements, all based on the premise that carmitine's basic role in human
metabolism can be enhanced if only there were more oPit. A similar process is seen with
19


antioxidants, selenium, B-complex vitamins, and countless other supplements. Other
examples can be witnessed on an almost monthly basis in the various scientific' diets that
are published. Many are built from a single observation of a physiological phenomenon
occurring in a laboratory. As raw material for such extrapolated notions, oxygen is a
powerful substance. It is so vital, so potent, that instant death is the immediate result of its
absence. It was as if life itself had been distilled. Thus the common notion: surely
supplementation of oxygen must be powerfully enhancing.
These extrapolated notions of oxygen did not go away with the oxygen parlors of the late
nineteenth and early twentieth centuries. They persist today. One hundred years later,
oxygen parlors are again popping up in urban centers. Sunday afternoons one can watch
professional football players gulping oxygen on the sidelines between plays. Michael
Jackson is said to sleep in a specially constructed bed with a controlled atmosphere of 100%
oxygen. Clearly the powerful notion of oxygen as a primal element of life are far from gone.
In retrospect, there were two major limitations to the use of oxygen early in the 20th century.
One was the efficiency of delivery. The most common method for delivering oxygen was
through a funnel placed near the mouth. Highly inefficient, this method of delivery rarely
raised the concentration of oxygen in inspired air by enough to make a difference. The
second limitation was that available technology allowed only for the use of oxygen for short
periods of time. Most oxygen for therapeutic use was produced by heating various oxides
and KC103, a process which was inconsistent, difficult, and produced a small volume of gas
(Sackner, 1974).
20


The problem of producing a reliable source of oxygen was solved by von Linde in 1895. He
discovered a process for producing liquid air by compression and cooling. Oxygen could
then be isolated by fractional distillation. While this made a purer source of oxygen possible,
most of it was used in welding and medical use of this technology was rare prior to the first
World War (Sackner, 1974).
Oxygen was used frequently for medical purposes during WWI, primarily in the treatment of
gas-poisoning. Barcroft reported his experience to the Royal Society in 1920. He had
developed a three bed chamber which could provide an atmosphere of40-50% oxygen. The
clinical improvement seen in these patients was perhaps the first convincing evidence fora
medical role for oxygen (Sackner, 1974).
Other delivery' methods were developed around the same time. The nasal catheter was
developed in 1907 and was used extensively in WWI for treating casualties. In 1918.
Haldane developed an oxygen delivery mask and used it successfully to treat lung injuries
from gas poisoning during the war (Eisenberg, 1966).
In 1921, A.L. Barach published his sentinel study of oxygen use in the Journal of the
American Medical Association (Barach, 1922). This study demonstrated the efficacy of
oxygen in the treatment of pneumonia. Dr. Barach would remain active in the development
and promotion of oxygen therapy throughout the rest of his career (Petty, 1995).
21


By the I950s, the use of oxygen became a fixture in medicine. "Iron lungs and oxygen
tents became images commonly shared among an American population battling polio and
tuberculosis. Assisted ventilation became increasingly sophisticated through the 1960s and
1970s, and patients too ill to breathe for themselves could be sustained indefinitely with
supplemental oxygen and mechanical assistance. In all of these cases though, oxygen was
used to replace an acute or catastrophic loss of pulmonary function. The early notion of
oxygen as an enhancer, a daily supplement, had yet to be realized. The use of oxygen in
chronic conditions such as emphysema was not common.
Beginning in the 50s, Barach and Cotes, among others, reported their experience with using
oxygen in patients with chronic hypoxemia primarily to improve ambulatory ability (Cotes
& Gilson, 1956). Still, few patients received the therapy. Delivering stationary or
ambulatory oxygen became more effective in the 1960s with the development of the plastic
double pronged nasal cannula. While ambulatory oxygen use had its proponents during the
60s, its use was still not widespread. One thing that was lacking was scientific evidence of
the efficacy of long-term supplemental oxygen therapy. In 1967, a group in Denver
published a study that showed that oxygen therapy, over a period of only one month,
improved pulmonary artery pressures, reduced red cell mass, and increased the activity level
and sense of well-being in a group of patients with emphysema (Levine et al.. 1967).
What followed, at least in Denver, was a small program involving fewer than thirty patients
who received supplemental oxygen. Initially a division of Union Carbide provided the
oxygen for free. Later they provided it for a fee. At one point, Dr. Petty and colleagues,
22


through persistence and pluck, got the City of Denver to pay for oxygen for one young
mother in order for her to stay home and care for her kids and keep them out of institutions
and foster homes. They convinced the city bureaucrats to pay for her therapy by showing
them how much thinner her hospital chart was during the time she was on oxygen compared
to the time she was off, and by estimating how much it would cost the city to care for her and
her family if she was not able to stay at home. In her case, oxygen was overwhelmingly
cheaper than the alternatives (Petty, 1995).
The Denver program, and ambulatory oxygen in general, was threatened, when Union
Carbide announced that they were getting out of the business of medical oxygen. Petty and
his colleagues began a vigorous lobbying campaign and convinced the company to stay in the
medical oxygen business (Petty, 1995).
Evidence demonstrating the benefits of long-term oxygen therapy continued to accumulate.
By the mid-70's there was consensus that a large prospective trial was needed. The
Nocturnal Oxygen Therapy Trial (NOTT) was the result. The first trial of its kind, this study
compared two groups of hypoxemic patients with COPD: one treated with continuous oxygen
therapy and one on nocturnal therapy only. The results of the NOTT trial, published in
1980, were striking. After twenty-six months of follow-up. patients on continuous oxygen
dramatically outlived those on nocturnal oxygen only. In fact the mortality rate in the
continuous oxygen therapy group was half that in the control group (Nocturnal Oxygen
Therapy Trial, 1980).
23


In the meantime, the British Medical Research Council was conducting a similar study
comparing stationary nocturnal oxygen to no oxygen at all. The survival curve of their
treatment group was remarkably similar to the nocturnal oxygen only treatment group in the
NOTT trial, suggesting a dose-response curve to oxygen therapy in these patients (Medical
Rearch Council Working Party, 1981).
Once a survival benefit was definitively proven, continuous supplemental oxygen became the
standard of care for patients with hypoxemic COPD. After the publication of the NOTT trial,
the use of supplemental oxygen exploded. The days of scrounging for funds to supply a few
patients with oxygen were over. Medicare data suggest that in 1995, 616,000 patients in the
U.S. used home oxygen at a total cost of $1.4 billion per year (O'Donohue & Plummer,
1995).
While the NOTT trial proved survival improved with supplemental oxygen therapy, a number
of other benefits have been also demonstrated. Various studies have shown that oxygen
improves self-reported quality of sleep and general comfort (Block. Castle, & Keitt, 1974),
increases exercise tolerance (Block et al., 1974; Leggett & Flenley, 1977: Stewart, Hood, &
Block, 1975; Vergeret, Brambilla, & Mounier, 1989), reduces polycythemia and pulmonary
hypertension (Levine et al., 1967), normalizes EEG patterns (Brezinova, Claverly, & Flenley,
1979), improves cognitive function (Krop, Block, & Cohn, 1973), and measures of
neuropsychiatric function such as memory, intelligence, motor skills, abstraction, and
perceptual motor ability (McSweeney, Grant, & Heaton, 1982). As for subjective quality of
life, there is less evidence for oxygen's efficacy.
24


The only prospective, randomized, controlled trial of the effect of oxygen therapy on quality
of life (QOL) was done as a part of the NOTT trial. Because oxygen therapy has been
definitively proven to improve survival, a prospective, randomized study like the NOTT trial
will never be repeated. Therefore, despite the flaws of the quality of life studies within the
NOTT trial, these remain the most definitive study of life quality as a function of oxygen
therapy.
To measure changes in quality of life, the 203 NOTT trial participants underwent baseline
neuropsychiatric testing and assessment of emotional status and general quality of life, as
measured by the Minnesota Multiphasic Personality Inventory (MMPI). the Profile of Mood
States (POMS), and the Sickness Impact Profile (SIP). While none of the measures used in
the study was designed specifically for COPD, each had been validated for use in CO PD and
had been shown to correlate with disease activity. Quality' of life measures were repeated
after six months of therapy. In this study, although certain measures of neuropsychiatric
function were shown to improve as a result of oxygen therapy: no measure of quality of life
improved as a result of therapy (Heaton, Grant, & McSweeney, 1983; McSweeney et al.,
1982).
These conclusions seem at odds with each other. If oxygen provides so many benefits to
hypoxemic patients with COPD, then why is there not more measurable effect on life quality?
Perhaps the first critique that should be raised is methodology. At the time of the NOTT trial,
more sophisticated, disease-specific measures of life quality were not available. Perhaps the
25


MMPI, the POMS, and the SIP were simply too insensitive to detect disease-specific
improvements in QOL. The critique may be valid, and were the NOTT trial to be performed
today, there are now a number of instruments that might better measure changes in QOL that
are disease specific. However, it is possible that the findings regarding QOL changes in the
NOTT trial are perfectly valid and accurately reflect the experience of COPD patients with
oxygen therapy.
The psychiatric status of hypoxemic patients has been studied. Previous work has
demonstrated that patients with COPD tend to be withdrawn and avoidant of social
interactions, isolated, lonely, anxious, and subject to high rates of depression (McSweeney et
al., 1982; Prigatano, Wright, & Levin, 1984). Some have postulated that there is a unique
psychology to patients with COPD that stems from the desire to avoid the sensation of
dyspnea. Neff coined the term "respiratory panic to describe the emotion felt by these
patients when they experience dyspnea as a result of exertion. He felt that respiratory panic
might explain the frequent avoidance of activity seen among COPD patients (Neff & Petty,
1971). Dudley noted that similar sensations of dyspnea are experienced with emotional
changes and postulated that "affective isolation may be an adaptive mechanism on the part
of these patients to reduce the severity of their emotional response and thus avoid the
smothering sensation of dyspnea (Dudley & Glaser, 1980). It might be expected that
supplemental oxygen would ameliorate these negative symptoms associated with COPD and
positively impact the patient's experience, yet no evidence exists that this in fact occurs. One
possible explanation for this lack of response to oxygen therapy is that by the time a patient is
prescribed oxygen, these patterns of response are too deeply rooted for the therapy to have a
26


measurably positive impact on quality of life. It has also been demonstrated that dyspnea is a
complex phenomenon and hypoxemia is but one component of this symptom (Bums &
Howell, 1969; Morgan, Peck, Buchanan, & et al, 1983). If that is the case, then correcting
the hypoxemia would incompletely relieve the symptom of dyspnea. Another possibility is
that the experience of oxygen therapy itself has negative consequences which attenuate or
offset the salutary physiologic benefits of the oxygen.
A number of issues may affect the quality of life of a patient receiving oxygen therapy. The
oxygen equipment is cumbersome and drastically restricts the patient's mobility. Nasally-
administered oxygen attenuates the sense of taste and smell and thus may negatively impact
appetite and eating (Burns et al., 1969: Heimlich, 1988). Susan Sontag observed that
changes affecting the face may have profound stigmatizing effects (Sontag. 1989); perhaps
the plastic cannula which must be worn over the face has a similar stigmatizing effect. The
fact that oxygen delivery cannulae containing the more bulky and conspicuous oxygen
conserving devices are less tolerated than regular cannulae is perhaps evidence that the
unpleasant cosmetic effect of the oxygen apparatus creates a significant negative effect on
QOL (Claiborne, Paytner, & Dutt, 1987). Further evidence of the negative cosmetic effect of
nasal cannulae on adherence with oxygen therapy may be seen in the fact that transtracheal
oxygen delivery via a microtrach, a much less visible form of therapy, has a higher rate of
adherence than traditional therapy (Hoffman, Dauber, & Ferson, 1987).
There are many factors that may impact QOL in a patient with COPD other than oxygen
therapy. Patients with COPD tend to be older, and as a result, many have suffered a number
27


of losses not related to their illness. Many of these people have lost spouses and live alone;
many patients have lost their careers or are retired; many suffer from a variety of other
illnesses and chronic conditions which may adversely affect their QOL. Nevertheless, in the
broad pharmacopoeia of modern medicine, oxygen therapy is unique in its visibility. With no
other modern medical therapy is the decision to adhere to treatment so public. Even with the
hair loss associated with chemotherapy, a patient can, if he or she chooses, avoid social
contact until their hair grows back. Patient's prescribed oxygen must daily make a decision
whether to adhere to their doctors advice, alter their appearance with the oxygen apparatus
and present themselves in public with their equipment and all the attention that will bring
them.
Oxygen is also unique in the physical difficulty of adhering to therapy. Compressed gas, the
most common form of ambulatory oxygen, is quite heavy. An E-tank with a stroller to pull it
may weigh as much as thirty pounds (Tarpy & Celli, 1995b). Lifting this load in and out of a
car or a shopping cart might even be a challenge for someone much younger and in better
health than the average patient with COPD. And even if the tank and stroller are manageable,
one hand must be devoted to managing the equipment. Many activities performed with
oxygen must therefore be accomplished with one hand. Given these limitations, to attempt to
resume a normal routine with oxygen equipment at hand will, at a minimum, require major
changes in daily routine.
A different, albeit surrogate, measure of the effect of oxygen on QOL may be the rate of
adherence with prescribed therapy. A patients decision to use or not to use oxygen is in
28


some ways a measure of their acceptance of the therapy a marker of the need he or she may
feel for it and the efficacy he or she ascribes to it. As with most medical therapies, adherence
with oxygen therapy is far less than perfect. Even though supplemental oxygen prolongs life
and relieves symptoms, adherence with therapy is typically less than 55% (Walsham, Lim, &
Evans, 1990). This number, which estimates adherence purely through meters that recorded
the duration of time that oxygen was flowing through the apparatus, may be an over-estimate.
A 1994 study, using an alternative method to measure adherence with oxygen therapy,
documented much lower use. This methodology involved a measuring device that was
triggered only when the cannula was on the face. The results suggest that most earlier studies
of adherence with oxygen therapy overestimated the amount of time that oxygen was used by
as much as 30% (Phillips, Harrison, & Cummin, 1994). Extrapolating these findings to
earlier adherence studies suggests that-adherence to oxygen therapy may be as low as 39%.
In summary, oxygen has a long history of use as a therapeutic agent. Early use was largely
empirical; based on the notion that since oxygen was essential to life itself, administering
more of it must be beneficial to health. Ample evidence gathered over the last forty years
documents the efficacy of oxygen in treating oxygen-deficient states. Despite evidence of
physiological efficacy, there has never been evidence that subjective quality of life improves
with oxygen therapy. Understanding why improvements in physiological function and
survival do not translate into improved quality of life is essential, if the therapeutic potential
of oxygen is to be realized.
29


CHAPTER 3
HEALTH AND ILLNESS BEHAVIOR THEORY FROM THE SOCIAL SCIENCES
How is illness defined? How do individuals come to decide that their experience or
symptoms constitute a problem? How do their friends, family, and acquaintances decide that
they are ill and how do theses people treat the individual once that is determined? How and
why do some individuals seek care for a health problem? What are the consequences of
seeking care or not seeking care for a health problem? For over fifty years social scientists
have sought to answer these questions and many others related to the complex beliefs and
behaviors around health and illness.
Framing the discussion requires first defining the terms disease, sickness, and illness. In the
lexicon of social science, a "disease is a concept that is most commonly described
objectively and biologically. A disease is a process of biological derailment that happens in
an organism. It is something that goes awry in a body. It is the stuff of medical textbooks,
something that can be described stoically, scientifically, and dispassionately as a physical
process. Nevertheless, while diseases may be objectively defined, they are necessarily
embedded in human experience, for Disease does not exist until we have agreed that it does,
by perceiving, naming, and responding to it (Rosenberg, 1992).
30


"Sickness is a social concept. As defined by Twaddle and Hessler. "sickness requires the
participation of others. Sickness exists when an individual possesses a problem that others
define as being worthy of therapeutic intervention (Twaddle & Hessler. 1987).
"Illness, according to Arthur ICIeinman, is "how the sick person and the members of the
family or wider social network perceive, live with, and respond to symptoms and disability.
Illness in this concept is subjective and experiential highly dependent on the individuals
involved in the experience, their beliefs, relationships, and the culture in which events occur
(Kleinman, 1988).
Cassell describes these concepts the most succinctly. "Illness is what the patient feels when
he goes to the doctor/' and "disease is what he has on the way home from the doctor's office
(Cassell, 1976)
For an individual's behavior to be affected by illness, he must first perceive himself to be ill.
How an individual comes to consider himself ill is an important question and one addressed
in a number of studies.
Helman identified eight subjective experiences that may lead individuals to consider
themselves as ill (Helman, 1990).
I) Perceived changes in bodily appearance, such as loss of weight, changes in skin
color, or hair falling out.
31


2) Changes in regular bodily functions, such as urinary frequency, heavy menstrual
periods, irregular heart beats.
3) Unusual bodily emissions, such as blood in the urine, sputum, or stools.
4) Changes in the functions of limbs, sucHi as paralysis, clumsiness, or tremor
5) Changes in the five senses, such as deaafness, blindness, lack of smell or loss of taste
sensation.
6) Unpleasant physical symptoms, such aes headache, abdominal pain, fever, or
shivering.
7) Excessive or unusual emotional states, such as anxiety, depression, nightmares, or
exaggerated fears.
8) Behavioral changes in relation to otheres, such as marital or work disharmony.
Harwood described two primary indicators of ilHness through which individuals come to
consider themselves as ill (Harwood. 1981):
1) The duration. location, and intensity of ssymptoms, and
2) The social effects of the symptoms in temns of interference with either valued social
activities or the fulfillment of role responsibilities
Another crucial question is under what circumstsances do individuals experiencing these
symptoms or events, define themselves as ill or nn need of medical care? Some research
suggests that while these events or symptoms aree quite common, defining the symptom or
event as problematic is much less so. For example, Dunnell and Cartwright found that 91%


of a sample of adults had experienced one or more abnormal symptoms in the two weeks
prior to the study, and yet only 16% had sought the advice of a physician (Dunnell &
Cartwright, 1972). Clearly some characteristic of the individual or experience lead some to
behave differently in the face of symptoms than others. Apple's work suggests that three
characteristics of a complaint make the difference in whether it was viewed as signifying
illness:
1) When the symptoms interfered with a usual activity
2) When the symptoms were new in onset
3) When the symptoms were ambiguous and therefore difficult for a layman to interpret
and diagnose (Apple, 1960)
Broader models of health seeking behaviors have been attempted. Mechanic, in his General
Theory of Health Seeking, makes the point that illness is context-dependent. How an illness
is perceived or identified, what help is sought and when, are all dependent on the context in
which the symptoms or events occur. To further define his model, Mechanic defines ten
determinants of response to illness (Mechanic, 1978).
1) The visibility, recognizability or perceptual salience of deviant signs and
symptoms
2) The extent to which symptoms are considered serious
3) The extent of disruption of roles and relationships


4) The frequency of appearance of signs and symptoms, their persistence, or their
frequency of recurrence.
5) The tolerance threshold of those who are exposed to and evaluate the deviant
signs and symptoms
6) Available information, knowledge, and cultural assumptions and understandings
of the evaluator
7) Basic needs that lead to denial
8) Needs competing with illness responses
9) Competing possible interpretations of signs that can be assigned to the symptoms
once they are recognized
10) Availability of treatment resources, physical proximity, and psychological and
monetary costs of taking action
Irving Zola, in his sentinel work on the role of ethnicity and culture in illness behavior,
describes what "triggers push someone to seek medical advice. The five factors which
ultimately led an individual with abnormal symptoms to seek care in his study included:
i
i
1) An interpersonal crisis
2) Perceived interference with social or personal relations
3) Sanctioning (anothers pressure or insistence that they seek care)
4) Perceived interference with vocational or physical activity
5) "A kind of temporalizing of symptomatology. In other words, setting an
external time criterion (e.g. If its not better in three days...) (Zola, 1983)
34


[Ilness and sickness occur in a broader context. Any individual that perceives herself to be ill
is enmeshed in a matrix of relationships with others. Just as an illness will change the day to
day life of the individual, it will change the nature of her relationships with others. One of
the first efforts to describe this phenomenon was Talcott Parsons description of the sick
role in 1951 (Parsons, 1951). While incomplete, and flawed in ways that will be discussed
below, the concept of the sick role is important in exploring the social dimensions of illness
and health.
Social relationships are defined by rights and responsibilities. Illness changes these rights
and responsibilities. For example, a sick person may not be able to work, take care of the
house, or tend to an ailing relative. In the face of illness, this deviance from normal role
expectations is allowed and may even be accompanied by certain new rights and privileges.
Examples of these new rights might include the right to stay home all day and rest yet still be
paid, the right to have someone else cook and clean the house, or the right to pay attention to
your own wants and needs and ignore those of others. These changes in social obligations
and rights in the case of illness constitute the sick role. In Parsons conception, altering
roles in this way constitutes a form of social deviance, whereas health is normal; the sick role
is a mechanism through which deviant behavior is allowed and accommodated within
prescribed conditions.
35


The conditions on the sick role are several. First, the sick individual must have a legitimate
illness. The physician is usually the arbiter of such legitimization and determines if the
illness is real" and deserving of special privileges. In turn, the patient is expected to seek
wellness and get well. Usually this means seeking the care of a qualified professional and
cooperating fully with the plan of care.
The sick role may be the most discussed and debated concept in medical sociology. It has
been criticized as being too narrow, and describing only a small set of a large number of sick
role variations. It applies to too few diseases, and does not describe the changes that occur
with chronic illnesses. Parsons sick role may also be culturally limited, applying only' to the
United States and not to other countries with other cultural assumptions. Physicians are
central to this model as well, and many patients do not seek out physicians for their illnesses,
yet still assume some form of a sick role. This model also fails to describe the illnesses that
are stigmatizing regardless of how diligently the patient fulfills their responsibilities within
the sick role.
Despite these shortcomings, the sick role as described by Parsons is nevertheless useful.
Clearly the concept of illness being imbedded in a mix of social responsibilities and rights is
valid and useful in exploring the social aspects health and illness. Furthermore, Parsons
work has been a jumping-off point for a number of authors who have attempted to expand the
model and more accurately describe what behaviors occur around illness.
36


One such effort can be seen in Suchmans description of the stages of illness (Suchman,
1965). He describes five stages of illness. The first stage is the symptom-experience" stage.
In this stage an individual recognizes that some health problem exists and attempts to
interpret the problem and define it relative to normal social functioning." Based on the
definition he or she ultimately assigns, the individual will set out on a course of action that
may or may not include treatment. Three outcomes are possible in this stage: denial of the
problem, deferral or postponement of admitting to the problem, or acceptance that a problem
exists.
The second stage is the assumption of the sick role. In this stage, an individual recognizes the
existence of a problem and begins to seek advice about care. Often this advice is from the lay
community. At this point he or she may begin to seek release from normal obligations. This
stage can result in denial of the problem or accepting advice from others.
The third stage is where medical contact occurs. Here the individual seeks care from a health
professional rather than from laymen. If the illness is recognized and professionally
legitimized, then the individual can begin to seek officially-sanctioned exemptions from role
responsibilities or he or she can be offered assurances from the health professional and return
to their usual roles. Other outcomes include: denial of the problem, accepting the advice of
the professional, or seeking additional opinions to confirm their interpretation.
The fourth stage is when the individual assumes the role of the dependent patient. Here he or
she has accepted the existence of a medically defined illness and has surrendered some of his
37


or her autonomy to the medical professional for decision-making on their behalf. Outcomes
can include acceptance of the patient role or rejection of it.
The fifth stage is that of recovery and rehabilitation. Here the patient receives the
recommended care and begins to recover from the illness. With recovery comes a resumption
of usual roles and an increasing independence from medical care and medical professionals.
While Suchman's "stages" may describe more illness behaviors than Parson's description,
and allow for more variation, this model also fails to account for chronic illnesses, where a
full return to function is not expected. Chronic illness may mean that the patient role sick
role is never fully relinquished and autonomy from medical professionals is never attained.
Chronic illness is the exception to many traditional models of illness behavior. In a chronic
illness, an individual often inhabits a unique and changing sick role. Expectations and
responsibilities may change with time and the individual may inhabit a middle ground where
some dependence on a professional health provider persists and yet some independence and
usual role functions are preserved as well. While historically acute illnesses, usually
infectious diseases, were the norm, chronic illnesses have supplanted them in the modern age.
Increasingly, individuals who suffer from an illness do so often for the rest of their lives. In
these cases, a linear model of debility and recovery is not adequate to describe the trajectory
of illness.
38


To account for the complexity of chronic illnesses, Conrad separates chronic illnesses into
three types (Conrad, 1987). The first he describes as Iived-with illnesses. These are
chronic illnesses that a person must learn to adjust to and live with but that are usually not life
threatening. Examples might be diabetes, epilepsy, asthma, or emphysema diseases that
can be managed such that a normal life may be possible. The second type of chronic
illness he calls mortal illnesses. These are life-threatening illnesses that require a radical
change in lifestyle depending on whether the disease is active or not. An example would be
cancer, where all responsibilities might cease so that intense therapy can be directed at
treatment. So called at risk diseases constitute the last category. These are actually not
illnesses so much as potential illnesses. A family history of cancer, heart disease, or
Huntingtons disease might fall in this category.
Haber and Smith, seeking an alternative model to the sick role for explaining illness behavior,
proposed the concept of normative adaptation to incapacity. Their model included three
stages (Haber & Smith, 1971):
1) Recognition of incapacity
2) Attribution of responsibility
3) Legitimacy of performance behavior.
Using this model to describe illness behavior and assumptions in the case of chronic illness
illustrates some of the challenges in adapting to chronic illness. First, recognizing incapacity
in a chronic illness means recognizing a permanent incapacity, and to some extent, accepting
39


a disability. Next is the difficulty in attributing responsibility. Despite scientific notions that
diseases happen to bodies independent of the person who inhabits the body, popular notions
of illness are more inclined to lay blame. Science may concern itself with biological
explanations of causation, but society is concerned with moral explanations. Throughout
history, humans have sought order in the world they inhabit, and this order is often sought
through moral explanation. To describe disease as a random, inexplicable event, is to admit
that the world is random and amoral. Our sense of order is preserved when we assign human
agency to diseases (Kirmayer, 1988).
Science, in its quest for mechanistic explanations, often assists the process of moral
explanation. An example is the identification of lifestyle-based risk factors. Smoking,
promiscuity, homosexuality, eating fatty foods, and alcohol consumption have all been
identified as disease-causing behaviors and thus ways of assigning blame to illnesses. Even
when a "known risk factor has not been identified, there remains the sense that if we were
sufficient stewards of our bodies and lived lives that were moral, moderate, chaste, and
sensible, good health would follow. Conversely, the appearance of illness must signify some
lapse in vigilance or responsibility. The result can be that the sufferer is blamed for his or her
own illness.
This moral dimension to illness is one reason why adapting to a chronic illness and disability
can be so difficult. For an individual seeking to remain blameless, admitting such a failure is
to invite opprobrium.


Counter to the tendency to assign blame and moral agency to illness is the tendency to
describe the process in purely biological terms. This process requires separating the person
from the body and medicalizing the process. An example is the transition in the notion of
alcoholism. Once the mark of a weak and morally flawed person, it is now defined as an
addiction: a biologically-based behavior that the individual is unable to overcome. Similar
explanations are available for smoking, promiscuity, depression and even minor fluctuations
in mood, as we move towards a society that seeks to eliminate blame and stigma from the
course of our lives.
The consequences of medicalizing and biologically assigning causation can be equally
distasteful. To assign biological agency is to weaken or discredit the person in some way.
Accepting a medical explanation for your actions is to admit to being an individual with a
diminished capacity for moral behavior. While medicalizing an event or behavior may
render an individual blameless, it also reduces the individual. This may explain much of
the resistance among those who do not seek or delay seeking a medical recourse to their
illness.
Fine and Ashch, in their work exploring the stigma of disability, shed some additional light
on this struggle faced by the chronically ill. They describe five common assumptions about
disability.
1) It is often assumed that disability is located solely in biology, and thus disability
is accepted uncritically as an independent variable.
41


2) When a disabled person faces a problem, it is assumed that the impairment
causes them.
3) It is assumed that the disabled person is a victim."
4) It is assumed that disability is central to the disabled person's self-concept, self-
definition, social comparisons, and reference groups.
5) It is assumed that having a disability is synonymous with needing help and social
support (Fine & Asch, 1988).
Each of these assumptions attenuates the person with the disability. While assistance may
result from seeking help and defining their disability, while their function may improve and
their symptoms may be reduced, so too may they may be reduced by admitting to some
degree of inadequacy.
Many authors have commented on the ironies accompanying societys response to the
disabled. The foremost irony is how common disability actually is. Depending on the
definition, as many as one in seven may be classified as disabled (Davis. 1995). Should
something so common be considered deviant? Zola argues that it should not. He proposes an
approach where the universality of disability is emphasized and incorporated into our
identities, rather than a focus on the specific inadequacies of those with disabilities (Zola,
1983).
Stigma is a common thread through these discussions and inquiries. In its original sense, a
stigma was a mark applied to a criminal or some other social deviant that indelibly labeled
42


their transgression. The term is more broadly used now but encompasses some of the original
concept. Stigma now is the taint of blame or shame that accompanies some deviance that sets
the individual apart from the rest of society (Goffman, 1963b). Ironically, as illustrated
above, there can be stigma associated with simply becoming ill. with recognizing illness in
oneself, with seeking help and a medical explanation for illness, and with not seeking help. It
would seem that stigma and isolation abound and can be found in any decision regarding an
individual's health, and yet experience and empirical evidence would indicate that this is not
always the outcome.
Among those who have attempted an explanatory model of stigma in illness is Friedson.
whose model describes a matrix where deviance is graded by its seriousness, the degree to
which it is legitimized, and the degree to which the individual is blamed for his or her
deviance. Legitimacy, in his model, can be conditional. An example would be a cold, where
legitimacy is conditional, dependent upon seeking appropriate care and getting well. In an
illness like cancer, legitimacy may be unconditional, with no obligations and a broad
extension of existing privileges.
Friedson notes that illegitimate illnesses tend to be stigmatized. To illustrate the model he
uses the example of stammering as a minor illegitimate condition; a few minor obligations
are suspended and a few new ones added. As a major illegitimate illness, he offers epilepsy,
where some obligations are suspended, but few or no new privileges are extended (Freidson,
1970).
43


Another aspect of illness behavior that has been intensely examined is the behavior
traditionally described as compliance. Most of the vast literature in this area has come from
the biomedical literature and has mostly documented the regularity with which patients fail to
follow medical advice. The evolution in framing this question can be seen in part in the
evolution of the language used to describe the behavior. 'Compliance has largely been
dropped from the official lexicon because of the strong connotation of coercion and physician
control of decision-making. "Adherence has been adopted in its stead as a word that places
the locus of control with the patient. Recently we have criticized this nomenclature as far too
restrictive to be useful as it describes neither how often a patient deviates from their
recommended therapy, nor why they do ( Steiner & Earnest. 2000).
Few observations illustrate the gap between the scientific model of biomedicine and the
subjective experience of illness as well as the conundrum of patient adherence or
compliance. The rational, medical model is simplistic in its calculus: identify the failing
biology and intervene to correct it. If a problem can be identified, and an effective solution
found, then there is no rational reason why any individual would fail to participate in the
therapy. Yet reams of studies over the last 50 years document that on average 30-50% of
patients fail to take their medications as prescribed. Clearly the rational rationale of
biomedicine is not a perspective completely shared by a large number of patients.
Arthur Kleinman offers a useful means of exploring this apparent conundrum with his
concept of explanatory models or EMs. EMs are held by patients and physicians alike and
can be defined as the notions about an episode of sickness and its treatment that are
44


employed by all those engaged in tlhe clinical process. EMs offer explanations of sickness
and treatment to guide choices amoong available therapies and therapists and to cast personal
and social meaning on the experience of illness. He further identifies five aspects of illness
that are elucidated in an EM.
1) The etiology otf the condition
2) The timing andB mode of onset of symptoms
3) The pathophysiological process involved
4) The natural hisr-tory and severity of the illness
5) The appropriatee treatments for the condition (Kieinman, 1980)
As is apparent from observations ahoout "adherence and "compliance, there are often
profound differences between the E.Ms of patients and those of providers. Patients may not
be able to fully elucidate their own EEMs. which may not be fully conscious. They may be
best described by "vagueness, multiplicity of meanings, frequent changes, and lack of sharp
boundaries between ideas and experrience. In contradistinction, physicians' EMs tend to
describe single causal trains of scientific logic. Interactions between patients and
physicians can be seen as an interacrtion between professional and lay EMs around a
particular episode of illness. EMs rrnay contain elements of beliefs held by society in general,
but do not necessarily mirror them vwith any precision.
When a physician examines a patiemts behavior and believes the patient has taken a course of
action that is not rational or predictaible, the explanation may be found in the different
45


explanatory models through which the decision is viewed. In all likelihood, the patient has
made the decision that is most consistent with the EM through which he views his illness.
As this discussion illustrates, health and illness and the behaviors around them are complex
and deeply enmeshed in the social matrix from which they arise. If behaviors and their
explanations appear conflicted and often contradictory, it is because the models and methods
of explanation and care of illnesses are often conflicted and contradictory as well. The
science that is at its explanatory best when divorced from the softer notions of person and
soul, often fails to incorporate that which is most valued by the person seeking its explanatory
power. Until an all encompassing, integrated, and holistic" model of illness is found, with
perfect explanatory power, the social sciences will have plenty of questions left to answer in
the area of health and illness.
46


CHAPTER 4
METHODS
The Research Question
Supplemental oxygen therapy has many demonstrated benefits for individuals with COPD
and hypoxemia. Despite these benefits, adherence to therapy is low and studies designed to
show an improvement in quality of life have failed to demonstrate such an improvement. The
purpose of this study was to explore and explain this apparent paradox.
The Sample
A total of 27 participants were enrolled in the study. The first seven respondents were part of
an initial pilot study and their recruitment differed from the remaining 20 respondents. Six of
the seven in the pilot study were recruited through National Jewish Medical and Research
Center. The principal investigator recruited patients from the waiting area at the outpatient
clinic. Participants who were waiting for their appointment with a COPD* specialist and had
oxygen equipment with them were approached by the principal investigator and asked if they
would be interested in participating in-the study. The study was explained to them and a
consent form was signed prior to the interview. The protocol and the consent form were
approved by the Colorado Multiple Institutional Review Board. None of the participants
approached in this manner, declined to participate. At least two participants were encouraged
to participate by their physician, who assured them that their appointment would not be
47


delayed or cancelled as a result of their participation. Some of the respondents were
introduced to the principal investigator by the nurse who directed the clinic.
(* A note about terms: Technically chronic obstructive pulmonary disease (COPD)
encompasses two conditions: emphysema and chronic bronchitis. There is increasing
recognition that this nomenclature is arbitrary and does not discreetly describe two separate
conditions. No participants used the term "chronic bronchitis in describing their condition.
Some used the term "emphysema" and some COPD: some used both. Throughout this
study, these two terms will be used interchangeably.)
Four of these six were interviewed at National Jewish, the other two were interviewed in their
homes. One of these respondents had traveled from a neighboring state to be evaluated at
National Jewish. The other respondents were local residents who had their care at National
Jewish and were there for follow-up. The seventh respondent was referred to the principal
investigator by her physician and was interviewed in her physician's office. The participants
in the pilot study participated only in an interview regarding their experiences with oxygen
and did not complete any study instruments or pulmonary function testing. Demographic
data on these participants was not systematically collected. Age, marital and employment
status, participation in rehabilitation programs, etc., were not specifically queried.
The remaining 20 respondents were recruited with the assistance of their oxygen service
company, Apria. Potential participants were initially contacted by Apria and were queried by
company representatives whether they had interest in participating in a study of quality of life
48


among oxygen users. The phone numbers of those indicating a willingness to be contacted
were compiled and given to the principle investigator. A total of 140 phone numbers were
compiled. The company did not keep track of the total number of respondents contacted in
this manner so the denominator cannot be determined.
All respondents were contacted by phone by the principal investigator. Potential participants
underwent a phone interview to determine whether they were suitable candidates for
enrollment in the study. Participants were excluded if they did not carry the diagnosis of
chronic obstructive pulmonary disease (COPD) or emphysema or if they had been
hospitalized in the three months prior to the interview. Because of the method of
recruitment, it was assumed that all respondents had an active prescription for supplemental
oxygen and used it at least some of the time.
Potential participants were told participation would include an interview of approximately
one hour in length and some simple lung tests." Prior to their interview, they would be
asked to complete two questionnaires. Each was informed that upon completion of the study,
they would be paid S30 for their participation.
Forty-nine potential participants were contacted. Seventeen (37%) were excluded because
they did not carry the diagnosis of COPD. One individual (2%) was excluded because he did
not speak English. Eight (16%) potential respondents declined to participate. Three
participants who initially scheduled an interview canceled the appointment before it occurred.
49


Twenty participants were enrolled. Nineteen were interviewed in their home. One
participant preferred for the interview to occur outside his home and was interviewed in the
office of the principal investigator.
Study Measures
Prior to the interview each participant received by mail, two instruments, the Brief Symptom
Inventory (BSI) and the St. Georges Respiratory Questionnaire (SGRQ). All participants but
one completed the SGRQ and the BSI. This participant had not completed the questionnaires
at the time of the interview and did not respond to subsequent requests to complete them.
The BSI is a 53-item self-report symptom inventory designed to reflect the psychological
symptom patterns of psychiatric and medical patients. The BSI is graded on a five-point
scale ranging from 0 ("not at all) to 4 (extremely). The instrument is scored on nine
symptom dimensions: somatization, obsessive-compulsive, interpersonal sensitivity,
depression, anxiety, hostility, phobic anxiety, paranoid ideation, and psychoticism. Three
global indices are also employed in scoring: the global severity index, the positive symptom
total, and the positive symptom distress index. The BSI is a standard instrument, used
extensively in biomedical research for-documenting psychological states. It has a high degree
of convergence with other, more complex scales, yet is quicker and easier to administer
(Derogatis L.R. & Melisaratos N., 1983).
The St. Georges Respiratory Questionnaire is a 76-item, self-administered instrument. It
was designed to quantify the impact of diseases of chronic airflow limitation on health and
50


well-being and to be sufficiently sensitive to respond to changes in disease activity (Jones,
quirk, Baveystock. & Littlejohns, 1992)." Scores are tabulated into three components:
symptoms, activity, and impacts: a summary total score is also calculated. SGRQ scores have
been shown to correlate highly with a number of measures of disease activity including FEV1
and FVC. The SGRQ symptom score correlates positively with cough and sputum
production, and frequency of wheezing. The SGRQ activity score correlates positively with
dyspnea grade, anxiety, and depression and negatively with 6 minute walking distance. The
version given to participants in this study was the American Syntax version, developed by J.
Barr et al at the National Education and Research Center for Outcomes Assessment (Barr,
Schumacher, Freeman, & Collette, 2000).
After consent, basic demographic information was collected on each participant including,
age, marital status, employment status and history, and ethnicity. Sources of healthcare,
consultations with specialists, participation in support groups and rehabilitation programs
were also queried. (See table one)
As a basic measure of pulmonary function, each participant had an FEV1 (forced expiratory
lung volume at one second) measured using the ENACT Airwatch device, a hand-held,
digital device capable of measuring FEV1 with a high degree of accuracy (Martin R.J., Pak
J., Kunselman S.J., & Cherniak R.M.. 1999). Height and weight were recorded for each
participant as well.
51


Each participant also participated in a semistructured interview of 30-60 minutes in duration.
During the interview, participants were queried about their diagnosis, the circumstances of
their oxygen prescription, patterns of use, perceptions of efficacy, beliefs regarding oxygen
and their illness, experiences with oxygen in social environments, and any other themes that
emerged relevant to their experience with oxygen.
Interviews were tape recorded and transcribed by a professional medical transcriptionist.
Transcriptions were proofed against the audiotape by the principal investigator who corrected
any discrepancies. All twenty-seven participants underwent interviews. For four
respondents, the tape of the interview was lost by the transcriptionist before they were
transcribed and thus were not available for detailed analysis. In these cases, the principal
investigator relied on his own memory and fieldnotes for the interviews. No quotes from
these interviews were used in the analysis, but emerging theories were tested against themes
that emerged from these interviews.
Qualitative Analysis
In this study, data collection and analysis overlapped heavily, but not perfectly. As
mentioned above, participants were recruited and interviewed in two waves. The seven
participants of the pilot study served as a primary exploration of emphysema and the
experience of oxygen use. The interviews occurred over a series of several weeks. Each
interview was transcribed and analyzed by the principal investigator. Some of these
interviews were coded and discussed by two separate PhD level research methods classes as
well; themes and coding schema from these analyses were incorporated into the master
52


analysis. Broad themes were extracted from individual interviews and explored with each
successive participant although formal coding was not performed until the end of the process.
The second phase of data collection relied heavily on the first. The analysis of the pilot data
formed the basis for the semistructured interviews of this second phase.
Participant interviews in the second phase of data collection were performed over a period of
twelve months. As mentioned above, the tapes were transcribed by a professional
transcriptionist and proofed against the tape by the principal investigator. Based on this
review, the transcription was corrected and notes were made regarding the thematic content
of the interview. Emerging themes were explored and tested in the interviews that followed.
Formal coding and final analysis were performed after all the interviews were completed. At
that time, all of the transcripts were loaded into the Atlas.ti software package and analyzed.
Open coding was performed first. In this process the data were "fractured," broken into
thematic pieces and labeled. Strauss refers to this process as the ''conceptualizing" of data
(Strauss & Corbin, 1990). In this process, stories, ideas, incidents, and statements from the
data were pulled out and examined. Each piece was then examined for its meaning and what
it represented. Thematic codes were affixed to each and comparisons were made between
these pieces so that like categories could be grouped and conflicting and dissimilar categories
could be compared and contrasted. Open coding was done in two complete iterations. Each
interview was reviewed and coded twice, as the coding categories shifted and evolved
through the process.
53


After the second iteration was complete, axial coding was performed. Where open coding
serves the function of labeling and identification, axial coding supplies the context. Through
this phase of analysis, associations between bits of data were explored. The relationships
between categories, their context, interactions and consequences were sought and elucidated.
This process again required multiple iterations, and while it was separated by intention from
the process of open coding, there was significant overlap between the processes. As
relationships and context emerged from the process, they were constantly tested against the
data to ensure validity.
The process of analysis I employed was informed heavily by grounded theory although I did
not adhere strictly to the process. According to Strauss, "A grounded theory is one that is
inductively derived from the study of the phenomenon it represents... It is discovered,
developed, and provisionally verified through systematic data collection and analysis of data
pertaining to that phenomenon. Therefore, data collection, analysis, and theory stand in
reciprocal relationship with each other (Strauss et al., 1990). The process I employed, meets
these criteria fora grounded theory, although there are some distinct departures from the
process as Strauss describes it.
Construction of a grounded theory, as described by Glaser and Strauss, relies heavily on
formal analysis during the process of data collection (Strauss & Corbin, 1994). Formal
coding, open and axial, is performed with each successive interview. The labels applied to
the data, how the data are grouped and interpreted, the actions and interactions between the
data, are all tested through further data collection. In this process, the coding and
54


interpretation of the phenomena of interest, is almost complete when the last interview is
complete. The process I employed was less formal in the early analysis. Experiences,
interpretations, strategies, and the trajectory of experiences with oxygen therapy were
extracted from the each transcript and explored in subsequent interviews. Formal, detailed,
computer assisted, analysis, however, was performed only after ali the data had been
collected.
Placing this study in a methodological context requires further comparison and discussion.
Methodological features borrowed from Grounded Theory include the systematic use of
generative and concept relating questions and systematic coding procedures. Another feature
of Glaser and Strauss7 Grounded Theory is theoretical sampling. They state, "Theoretical
sampling is the process of data collection for generating theory whereby the analyst jointly
collects, codes and analyzes his data and decides what data to collect next and where to find
them in order to develop his theory as it emerges. The process of data collection is controlled
by the emerging theory (Kuzel. 1992).77 While each wave of data collection informed the
next, the methods employed in the process of data gathering and analysis here limited the
degree of purposive sampling that occurred. For example, while theoretical sampling was
employed in each interview, it was not employed in participant selection. One means of
selecting participants would have been to select them based on the presence of certain
experiences they shared in common. For example, all participants included in this study
were, at least in part, current users of oxygen. Participants who had rejected oxygen therapy
completely were not sampled. Furthermore, the interpretation of some themes that emerged
in the late analysis, could not be tested by additional interviews, but only by testing the
55


interpretation against the data as it currently existed. It should be noted that regardless of the
methods employed in data analysis, the completeness of a data set is judged, not by testing
each theme and relationship in an interview, but by theoretical saturation (Kuzel, 1992)."
Lincoln and Guba write of sampling to the point of redundancy (Lincoln & Guba, 1985). By
this measure, an adequate sample for qualitative description is defined not by numbers, but by
redundancy. When nothing new has been said in successive interviews, when the same
themes and interpretations arise again and again, then a sample can be said to be adequate. In
an effort to establish some sampling guidelines, multiple authors have contributed to the
following rule of thumb: 6-12 sampling units are generally adequate fora homogenous
sample and 12-20 are needed when trying to collect disconfirming evidence and to achieve
maximum variability (Kuzel, 1992). By both this rule of thumb, and by the measure of
theoretical saturation, the sample included in this study was more than adequate. While each
story was unique in its details, the thematic content of the respondents stories because more
or less redundant after about twenty interviews. Continuing to sample added more detail to
certain pieces of the work, but did not add anything to the fundamental typology. For
example, individuals continued to add to the list of specific events that promoted their
reliance and use of oxygen, but did not add any new categories of experiences or any new
steps in the processes that others had described. At this point, data collection had clearly
reached the point of theoretical saturation.
Early in the data collection process, as a conceptual framework was emerging, each
additional interview challenged or added to the framework. A new respondent was as likely
56


to disconfirm a conclusion as to confirm it. As the data collection process progressed, and as
the framework matured, this changed. Eventually disconfirming data stopped appearing and
each consecutive interview simply added confirmation to the model that is described here.
The ultimate goal of Grounded Theory methodology is to develop a descriptive theory that is
conceptually and descriptively dense, one that encompasses the breadth of the experience,
and allows for both variation and conceptual integration. This study meets those criteria.
A discussion of the methodology and approach employed would be incomplete without some
discussion of the tradition of phenomenology. To borrow Patton's words, this is a tradition
that focuses on the question: "What is the structure and essence of the experience of this
phenomenon for these people?" This is a tradition that recognizes the fundamental
subjectivity of life. It is a research tradition founded on the assumption that "we can only
know what we experience." What we "know," in turn, is a function first of what we perceive
through our senses, and later understand by interpreting, relating, and describing those
perceptions in a way that assigns meaning to them. A phenomenology strips away the
assumption that there is some distinct, objective reality and focuses instead on describing the
experience and the meanings assigned to that experience (Patton, 1990).
Phenomenology assumes that in human experiences, there is an "essence" which is common
to the experience and which is describable. This assumption is fundamental to
phenomenology, as it is the description of the experience and the articulation of that essence
that is the goal of the study. Phenomenology thus, searches for the commonality of an
57


experience and its interpretation. In this study, I have assumed that in the experience of using
oxygen for the illness we call emphysema, there is some commonality to that experience
which is describable.
While the methodology I have employed straddles different traditions of social science
research, it adheres rigidly to none. As multiple authors attest, few qualitative inquiries can
be described as pure examples of a single methodological tradition and few studies can be
adequately conducted based on a priori assumptions of optimal methodology. This study has
drawn from multiple epistemological perspectives and is stronger for it.
Several quantitative measures were employed: the SGRQ. the BSI, FEVl. height, and weight,
as well as demographic characteristics. These data were intended to add greater descriptive
depth to the sample. Because of the study design and the sample size, statistical comparison
of the patient groups and the themes they expressed is not appropriate and was not performed.
Trustworthiness
All of the data collection and the majority of the data analysis were performed by the
principal investigator. Outside reviewers were recruited to review the results for
trustworthiness. Among the reviewers was a pulmonologist with over forty years experience
in caring for patients with COPD. He participated in many of the early trials of oxygen
therapy, and had seen oxygen therapy rise from an obscure and difficult to obtain treatment to
the established standard of care. He offered some clinical and political perspective to the
some of the issues facing patients as they used oxygen, particularly noting that the financial
58


incentives of the oxygen suppliers may at times stand in the way of optimal patient therapy.
He felt that the experience of oxygen as described in this work was an accurate reflection of
the patient experience as he had seen it during his life in practice.
Also reviewing the data were two other physicians, an academic internist with experience in
qualitative methods and a psychiatrist with masters-Ieve! training in humanities. These
individuals, in different places in the text and in different ways, challenged some of the
interpretations and nomenclature in ways that are now reflected in this final draft. They too
felt that the fundamental model of patient experience was an accurate reflection of their
observations as clinicians and academicians.
Two individuals with COPD reviewed the document as well. Both had used oxygen for at
least two years. Both were excited to talk about the document after reading it. Each
described finding myself7 in the text. Both pointed out where they fit in the description and
reflected back on the processes they had personally experienced that had moved them along
in their oxygen use from the time they were first diagnosed. Each also was struck by certain
details in the stories of others volunteering what advice they would give to that person if
they met them and offering alternative ways of viewing that persons circumstances.
This document was five years in the making. From the initial conversation with Ms. L that I
describe in the introduction, to the final completion of this document, I estimate that I have
been involved in the care of 120 individuals who use supplemental oxygen. I have written
the initial oxygen prescription for three to five people a year over that time, and have been the
59


primary prescribing physician for perhaps half of the rest of that group. While only twenty-
seven individuals were formally enrolled in the study, the rest of these people participated
informally. In my practice with these people, I have watched and listened and I have
observed and queried. I have used this work as it has emerged to interpret the experience of
these patients and I have used their experiences and stories to shape this work as it was
emerging.
In the end, I am confident that this work is an accurate description of the experience of
supplemental oxygen therapy that it is valid and reliable, that it meets the criterion of
trustworthiness.
Limitations
The intent of this study is descriptive. Its purpose is to describe in detail the experience of
supplemental oxygen therapy. There is a heavy prevalence of depression and anxiety
symptoms in the sample. This study cannot determine causation. How much of the difficulty
adjusting to oxygen is a function of intrinsic depression, or how much depression is a
function of trying to adjust to the oxygen, are questions that cannot be answered by this
study. Breathlessness and anxiety may overlap in similar fashion; similarly their component
roles cannot be determined by this study.
The participants represent a relatively broad sample of Americans. 11% (3 of 27) were
African American, which approximates the 12% they represent in the population. There were
no participants of Hispanic, Native American, or Asian descent, which may be groups with a
60


different perspective or experience. Their absence from the sample coufd limit the
generalizability of the findings to those groups. Genders were equally represented: fourteen
participants were male, thirteen female. The sample was diverse in educational level. The
participants were all Americans and all a product of this culture. These findings may not be
generalizable to other cultures.
One group not represented is those who have a diagnosis and a proven need for oxygen, but
do not use it at all. Empirically this sample would constitute two groups of people: those who
have turned down oxygen because they refuse to use it, and those who do not use oxygen
because they are under-insured and cannot afford to pay for it. It is conceivable that those
who choose not to use it may have a different experience and perspective than those who
have chosen to use it. The absence of this group from the sample is a limitation of this study
and its generalizability. Those who need oxygen and cannot afford it empirically constitute
still another potential piece of the sample that is missing. The need or lack of need they
perceive, relative to the scarcity of the resource, could be an important perspective to include
and the absence of that perspective is again a limitation.
61


CHAPTER 5
THE SAMPLE
Demographic Characteristics
The study sample represented a broad sample of individuals with COPD. All study
participants were over the age of 50. The age range among those for whom the data is known
was 56-94 years with an average age of 69. Four participants (15%) were in their 50s, five
participants (19%) were in their 6CFs, nine participants (33%) were in their 70?s, one
participant was 85, and one was 94. Ages were not known for seven participants. Men and
women were equally represented (14 men (52%), 13 women (48%)). Three of 27 (11%)
participants were African-American. The remainder of the participants was non-hispanic
white. No Asian-Americans, Hispanics, or Native Americans were among the sample.
Only two participants (9%) were working at the time of the interview. One worked as a
travel agent, the other ran a retail business part time from her home. Employment status was
not determined for five participants (19%). Fourteen participants (52%) retired from their
employment independent of their illness. Four participants (15%) retired because of their
illness and the disability that it represented. One participant had a disability claim pending at
the time of the interview and one participant had been unemployed for a number of years
prior to his illness. Fifteen participants (56%) were married, five participants (19%) were
62


divorced, five participants (19%) were widowed and one participant (4%) had never married.
Marital status was not determined for one participant. Seventeen participants (71%) were
still driving at the time of the interview. Driving status was not known for 3 participants
01%).
15 participants (56%) used liquid oxygen as their portable oxygen source. Seven participants
(26%) had an AC concentrator in their home for a stationary source of oxygen. Three
participants (11%) used compressed oxygen (E-tanks) for their portable source. One
participant had compressed oxygen for both home and portable use. 3 participants (11%) had
transtracheal delivery of oxygen through a microtrach. The remaining participants used
plastic nasal cannula for delivery. The source of oxygen was not known for 7 participants
(26%). Seventeen participants (65%) had a pulmonologist involved in their care, all but one
of the rest had not seen a specialist. Consultation with a specialist was not determined for the
remaining participant. Ten participants (37%) had participated in a structured pulmonary
rehabilitation program. Eleven participants (41%) had not participated in any rehabilitation.
For six participants(22%), status regarding rehabilitation was not determined.
Four participants (15%) had not completed high school. Seven participants (26%) were high
school graduates. Five (19%) had attended some college. Four (15%) were college graduates
and one participant had a masters degree in social work. Sixteen participants (59%) owned
their own home or trailer. One rented a house and 3 (11%) rented an apartment. For seven
participants (26%), information regarding home ownership was unavailable.
63


Almost all of the missing data are from the respondents in the pilot study. These individuals
were almost all contacted on the day of their interview. I did not systematically gather
demographic information on this group and had no means of contacting them after the
interview was complete. As mentioned previously, this group did not complete the
questionnaires or the spirometry.
Pulmonary and Psychological Status
Nineteen participants completed the St. George Respiratory Questionnaire (SGRQ). The
SGRQ is 76-item self-administered questionnaire that correlates closely with disease activity
and severity (Jones et al., 1992). Scores range from zero (no impairment) to 100. Ferrer et al
demonstrated that SGRQ scores are useful in staging patients by their disease activity. They
used the three stages defined by the 1995 American Thoracic Society statement on the
diagnosis and care of patients with COPD. This clinical guideline used FEV1 as means of
staging, and divided such patients into three disease stages. Stage I was defined by
spirometry as an FEV1>49% predicted. In their study, this group had a mean total SGRQ
score of 34. Stage II included patients with an FEV1 35-49% predicted. In this group the
mean total SGRQ was 42. Stage III included patients with an FEV1 <35% predicted. In their
study, this group had a mean SGRQ score of 55 (Ferrar et al.. 1997).
I have made an effort to group the SGRQ scores in a manner that meaningfully stratifies the
respondents. Only one participant had an SGRQ score under 25. Six participants had SGRQ
scores between 26 and 50 (32%). Nine respondents (47%) had SGRQ scores between 51 and
75 and three (16%) had scores greater than 75. Thirteen respondents (68%) had total SGRQ
64


scores above 55, the mean in the most severe group stratified in Ferrer's trial. Based on
SGRQ scores, this sample was a group with moderate to severe COPD.
Eighteen participants completed the Brief Symptom Inventory (BSI). Of the nine dimensions
measured in the BSI, four dimensions were selected that were most salient to the study
sample: somatization, depression, anxiety, and phobic anxiety. In the dimension of
somatization, the study sample differed significantly when compared to a non-ill community-
norm (mean 1.14 vs. 0.29, z test 9.04, prob>[z] 0.000), but not when compared to the norm in
an outpatient psychiatry population (mean 1.14 vs 0.83, z test 1.68, prob>[z] 0.09).
Depressive symptoms were significantly higher than non-ill community norms (mean 0.87 vs.
0.28, z test 5.57, prob>[z] 0.0001), but less than an outpatient psychiatry norm (mean 0.87
vs. 1.8, z test 3.75, prob>[z] 0.0002) Anxiety symptoms were also higher than non-ill
community norm (mean 0.57 vs 0.35, z test 2.13, prob>[z] 0.033) but less than outpatient
psychiatry- norm (mean 0.57 vs. 1.7, z-test-4.92, prob>[z] 0.0001). Phobic anxiety was not
different from the community norm (mean 0.1888 vs. 0.17. z test 0.62, prob>[z] 0.56) but
significantly less than the outpatient psychiatry norm (mean 0.188 vs. 0.86. z test3.16,
prob>[z] 0.0002).


Table 5.1 Description of study participants
N=27 % Range Mean
Male 13 48%
Ethnicity
Caucasian 24 89%
African American 3 11%
Age 56-91 69.4
Employment
Retired (regular) 14 52%
Retired (disability) 4 15%
Employed 2 7%
Unemployed 1 4%
Unknown 5 19%
Marital Status
Married 15 56%
Widowed 5 19%
Divorced 5 19%
Single (never married) 1 4% 1
Unknown 1 4% t 1
Currently driving 17 71%
Not driving 7 26%
Driving status unknown 3 11%
Equipment
Compressed portable 4 15%
Liquid portable 15 56%
Unknown 8 30%
Transtracheal catheter 3 11%
Has seen a specialist 17 65%
Unknown 1 4%
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Table 5.1 Continued
Participated in rehab 10 37%
Unknown 6 22%
Education
Less than high school 4 15%
High school graduate 6 22%
Some college 5 19%
College graduate 3 19%
Unknown 7 26%
Housing
Owns home 16 59%
Rents home or apt. 4 15%
Unknown 7 26%
67


Table 5.2 Pulmonary status of Sample
N=19 %
St. Georges Respiratory Questionaire
SGRQ total <25 l 5%
SGRQ total 26-50 6 32%
SGRQ total 51-75 9 47%
SGRQ total >75 3 16%
Table 5.3 FEV1 Measures
Average Range
FEV1 1.11 0.3 -2.58


Table 5.4 Selected Measures from the Brief Symptom Inventory (BSI)
Sample Community non- ill Outpatient Psychiatry
Somatization Mean= 1.143 Std Dev=0.62 Mean=0.29 z test=9.04 Prob>[z]=0.000 Mean=0.83 z test=I .68 Prob>[z]=0.092
Depression Mean=.868 Std Dev=0.63 Mean=0.28 z test=5.57 Prob>[z]=0.0001 Mean=1.8 z test=-3.75 Prob>[z}=0.0002
Anxiety Mean=0.57 Std Dev=0.40 Mean=0.35 z test=2.13 Prob>[z]=0.033 Mean=l .7 z test=-492 Prob>[z}=0.0001
Phobic Anxiety Mean=0.188 Std Dev=0.24 Mean=0.17 t=0.62 Prob>[z]=0.536 Mean=0.86 t=-3.16 Prob>[z]=0.0002
69


CHAPTER 6
THE DIAGNOSTIC MOMENT
The Threshold of Illness
From a biomedical perspective, emphysema* is understood to be a gradual process a slow
and progressive destruction of alveoli that steadily erodes the patients aerobic capacity.
This model describes a continuum of declining function where week to week, year to year,
the patient loses function much faster than healthy peers. While this model of illness is
shared by physicians and other scientific examiners of the phenomenon, it is not shared by
patients with COPD*. A perception of a long, gradual decline over many years was not
reported once among these study participants. Each could describe the time when they got
emphysema or reached COPD. For each, this moment was an unanticipated epiphany.
While biomedically one could argue that the disease had been present for some time, it was
not until some threshold was crossed that the illness was perceived as present by the
participants.
There were two processes that led to crossing the illness threshold:
1) An acute medical event
2) Increasing symptoms such that usual activities were noted to be difficult.
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A variety of medical events led to botli a diagnosis of emphysema by a physician and an
awareness by the participants that they indeed had the illness. Among those described events
were: a prolonged recovery from surgery, complicated by hypoxia: a bout with pneumonia:
and symptoms due to respiratory illnesses other than pneumonia. In these cases awareness of
the illness came only after a dramatic period of seemingly new symptoms. These people
perceived their attenuated function not so much the nadir of a slow downward slide but a
quantum drop that came without warning.
Among those who described an increasing burden of symptoms as the harbinger of illness,
some described an awareness of the symptoms that was sudden and fairly acute. A single
participant recalled an awareness of symptoms for two years prior to her diagnosis: the rest
felt that their symptoms had appeared over a period of several weeks to months. One
participant, remembering his own fathers struggle with COPD. quit smoking to preserve his
own health. Three years later, one year into his early retirement, on one particular day, he
discovered himself struggling to mow his lawn. He sought the attention of his physician who
gave him the diagnosis of emphysema and prescribed the oxygen that he has used ever since.
That day of diagnosis marked the moment of his transformation from healthy to infirm and
linked his future with the illness he had watched claim his father. He had no awareness of his
impending diagnosis until it happened, although he had contemplated the possibility for
himself as a smoker and as his fathers son.
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Some participants did report a sense of progression, yet they uniformly described a short one.
Typically this was a few months to two years of dyspnea with activities that were previously
effortless, accompanied by some struggle to understand the symptoms and seek medical help.
For about two years I was having a great deal of difficulty breathing and doing
things. Climbing the stairs from the basement was a nightmare. But it was for two
years prior to the oxygen. I went to my primary physician because at the time I was
having terrible heart palpitations... She said It's really nothing. You have
emphysema.
Another participant, looking back on the months and years prior to his diagnosis, was able to
describe a sense of the progression only after the fact. This gentleman, who was diagnosed
after a slow recovery from surgery, denied any sense of pulmonary decline prior to the
diagnosis, but noted:
You know, something like that comes on gradually. When l look back on it, l can
see it now.
Another, placed on oxygen after a hospitalization, denied a need for oxygen prior to that point
but was retrospectively aware of his declining function.
No, I was getting shortness of breath... I couldn't water ski as hard. People probably
just figured it was old age, or smoking.
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One participant described his sense of the threshold a point you reach where you are aware
of your need for oxygen.
Before you use oxygen, you don't realize it... You just dont realize you need it until
you reach COPD...
Mrs. M described her experience before the diagnosis of getting a yearly case of"bronchitis
which got worse each successive winter. One afternoon she was doing some yard work and
became aware of how labored her breathing was. She saw her physician and was told of her
emphysema for the first time. She had thought little of the worsening bouts of "bronchitis
as they happened, but in retrospect saw those episodes as signs of her declining health.
It is difficult to imagine that the participants perspective of a sudden onset of symptoms is
reflective of their physiological decline. Why then was there so little awareness of some
decline? The point of awareness of illness for most patients came when their symptoms
became severe enough to impair their ability to accomplish a usual activity. It would appear
that health and normalcy are thereby defined as the ability to continue in usual roles. When
usual roles are threatened, or no longer possible, the threshold is crossed and the individual is
forced to consider themselves as ill. Declining efficiency is not noted until it is severe
enough to threaten the activity itself, at which point the decline is at last perceived as
problematic and an explanation is sought.
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Several participants described an episode of acute illness that passed this threshold. They
received their diagnosis, but were able to return to a level of function that allowed them to
discount the diagnosis and put away the oxygen, at least for a while. A recovery, in the two
cases where it was described, allowed the participants to put away the diagnosis for awhile
and return to their lives as "normals. Both retrospectively viewed that episode as an initial
experience with emphysema and a marker of what was to come. Neither viewed it in that
light at the time. Looking back on the time of the acute illness, one participant. Mrs. K.
described the active process of denying and avoiding any meaning of that bout with her
illness and her need for supplemental oxygen. She had been prescribed oxygen for several
weeks after an acute illness, but discontinued it when her symptoms improved enough that
her physician responded to her insistent requests to stop using it. During that time, she was
afraid to examine her own symptoms and afraid to discuss them openly with her doctor.
Recalling those days, she states:
I just wouldn't admit what was happening to me. I wouldn't tell my doctor things. I
didn't want to go on it (oxygen). My husband was on it off and on for 19 years for a
heart condition. I just didn't want to go on it.
Mrs. K describes denial. Her symptoms had reached the point where they were a daily
presence and she continued to struggle in her usual roles despite them. For Mrs. K, coping
with her symptoms was in part a struggle against going on it. Her husband's declining
health was linked to being on it and her own sense of health and normalcy was threatened
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also by going on it." Accepting the need for supplemental oxygen was for her.
indistinguishable from accepting a new picture of herself as ill.
Figure 6.1: The trajectory of illness a patients view
The Diagnostic Moment
As described above, the participants in this study viewed the trajectory of their illness as two
parallel lines, one representing their life as normal and one representing their life with
COPD (see figure I). The two lines are connected by an event or a series of events that
occurred over a relatively short period of time. The transition from the line representing
normal to the one labeled COPD is what I have referred to as the illness threshold. Before,
life was normal; afterward there is an illness. There is a closely related, yet separate event
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that warrants scrutiny. That event is the process of acquiring a label for the illness: a
diagnosis.
As I use the term here, a diagnosis is a medical label. It is not often a label people would
apply to themselves without the help of a physician or other health care provider. The
participants who looked back and remembered symptoms in the days prior to receiving a
diagnosis or viewing themselves as ill recalled their symptoms as deviations from their own
sense of normal, and did not apply a diagnostic label. They had shortness of breath while
water skiing, or more difficulty climbing stairs, but they did not consider it an illness, and
they did not apply a diagnostic label to their symptoms. Yet each of these participants
eventually sought medical help as their symptoms increased and each of them eventually
acquired and accepted a diagnostic label.
For these participants with COPD. receiving the diagnosis and initiating oxygen therapy were
sentinel events. While these two issues seem separate the diagnosis of a physical condition
and the prescription of a therapy to treat it for all the participants interviewed the events are
inextricably entwined. While some received a diagnosis of emphysema before they were
given a prescription for oxygen, it was the need for oxygen that gave the diagnosis its
meaning. It was as if the label of emphysema was purely hypothetical, with no measurable
reality, and the need for oxygen was the evidence necessary to make the diagnosis real.
It is as if there are two separate diagnoses. One is emphysema" in small case letters a
hypothetical condition with hypothetical consequences, but of no real personal importance.
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The other is EMPHYSEMA" in capital letters a real label for a real condition with real,
measurable personal consequences. All of the participants could describe the time when they
were diagnosed with EMPHYSEMA. Five recalled the diagnosis of emphysema.'
Of the participants who related receiving the lesser and, from their perspective, largely
hypothetical diagnosis of emphysema, three received it incidentally. As a part of a routine
exam, their doctors, after listening to their chest or looking at a chest x-ray. applied the
diagnostic label of emphysema. In these cases, there was no palpable symbol to give the
diagnostic pronouncement meaning. They did not have symptoms they perceived as
worrisome and the diagnosis was not serious enough that their physician did much about it.
They heard the diagnosis, assessed their current status, determined it was unchanged, and
returned to life as normal, without being affected by the diagnosis. It was not a label that
seemed to say much about them or their condition: it required no change in their routine and
did not symbolize any symptoms or change in role or status.
Two of the participants received the diagnosis of EMPHYSEMA and were able to later
mentally downgrade it to emphysema. Both of these women described a period of acute
illness that led them to seek care. Both were diagnosed with COPD and given prescriptions
for oxygen and both had what they considered a full recovery and return to normal function.
One of the participants persuaded her doctor to cancel the prescription and returned to her
normal life, actively ignoring the symptoms she was experiencing and refusing to consider
that they represented the diagnosis with which she had been recently labeled. The other, felt
she had no residual symptoms. She interpreted her difficulty with stairs as normal, and filed
77


away the doctors diagnosis for two more years until her symptoms again progressed in the
face of an acute illness. In both cases, these women crossed the illness threshold, but then
turned back. They reinterpreted what had happened, viewed it as an acute event, and largely
rejected or ignored the diagnostic label that was applied to it. They viewed the diagnosis as
serious and truly representative of illness only after their symptoms were worse and after they
again required oxygen therapy.
Regardless of specific details, each participant experienced a diagnostic moment a moment
when they received a diagnostic label for their condition that stuck. For all but five
participants, the seemingly separate events of being labeled with emphysema and of being
prescribed oxygen were one and the same. The other participants first received a diagnosis
that had little impact on how they thought of themselves or on their lifestyle. They viewed
themselves as healthy, normal individuals to whom a physician had affixed a label with little
meaning. In their own minds, they remained free of a diagnosis. For these individuals, a
permanent prescription for oxygen was a large part of what made the diagnosis real.
A limitation of the perspective documented in this study is that all of the participants had
active oxygen prescriptions. Perhaps if the interview had occurred closer to the time of the
original diagnosis of emphysema, the participants would have reported more concern.
Perhaps the perspective after some time of oxygen use is to recall an earlier time with
minimal symptoms as insignificant or trivial in light of what later came to pass. Regardless
of the explanation, these participants viewed the prescription of oxygen as their true
diagnostic moment. It was this prescription that gave the concept of emphysema its meaning.
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The therapeutic event of receiving an oxygen prescription was for them inextricable from the
diagnostic event of receiving and accepting the label of emphysema or COPD.


CHAPTER 7
THE PHYSICIANS ROLE
A famous New Yorker magazine cover depicts a New Yorkers view of the world. The
Hudson River separates the boroughs of the city from the rest of the country, which, as
drawn, is a fraction of the size of the city itself. Times Square is almost larger than the whole
midwest. Chicago is a dot in the middle of a thin country, just as Los Angeles and San
Francisco are dots perched on the edge of the tiny Pacific. As a physician, I have my own
view of medical encounters. In this picture, the patient and physician are equally represented,
with the large and weighty medical problem balanced between them. That a discussion of the
physicians place in a patients struggle with COPD and oxygen therapy occupies only a few
pages in this monograph says that the patient would draw the scene differently the physician
occupying the place of Chicago at best. More likely, in both size and proximity, the
physicians place on such a map would be closer to Los Angeles or San Francisco. Yet the
map would be incomplete without the physician on it somewhere.
It is in the story of the diagnosis that the physician looms the largest. Because it is the
purview of health care providers to diagnose COPD and apportion the appropriate therapy, it
should be expected that any respondents story begin with such a provider. (While nurse
practitioners and physicians assistants could make such diagnoses as well, all study
participants related a narrative that began with a physician). For these participants, this
diagnostic event is the moment when their new life begins, when they must grapple not only
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with the new burden of oxygen apparatus, but also with a new identity and a new self to be
presented. Almost all the participants remember this as a traumatic time of struggle with
new or more severe symptoms as well as with this new realization of self. In all cases, a
physician was a part of this story.
Most participants described a brief conversation with their physicians where they were told
they had "emphysema or COPD.77 One participant received word from her physician
through a phone message left with her husband. Another described the terse diagnostic
announcement by her physician:
She said Tt7s really nothing. You have emphysema. It was bound to happen.7 Slam
and out the door she went.
In addition to pronouncing the diagnosis, physicians were described giving information about
the diagnosis and about oxygen therapy. The details of that information, its adequacy, clarity,
and availability, varied widely among the participants. Some were told at the outset that they
would need oxygen for life. Some described receiving some basic information about COPD
or encouragement to stop smoking. None described any conversation with their physicians
about what it would be like to adjust to using oxygen. Most participants felt that the initial
information they had received about oxygen was inadequate. Said one:
81


I wish they had told me something about it. But they didn't tell me nothing. You
know, what it does, how it affects your regular things, and stuff. But they didnt tell
me nothing. They just put me on it and that was it.
Few participants reported any expectation that their physician would prepare them for the
difficulties of using oxygen or viewed their physicians failing to do so as a significant
shortcoming. One participant accepted the blame for being uniformed herself.
A lot of the things that had to be solved occurred when I didnt listen and hear what f
was told. When you have a question, ask your doctor, cause 9 times out of 10,
anything what was bothering me with regard to my oxygen, either my doctor or my
oxygen man could answer.
In this statement, she confirms a theme that was suggested repeatedly by many participants:
the responsibility for managing oxygen as a therapy and as a part of life falls on the
individual patient, not on the provider. No one expected their doctor to take charge of their
illness or to pave the way for them. The responsibility instead fell on their own shoulders.
A number of study participants described receiving ambiguous information about their need
for oxygen and how long they would need it. One participant asked her physician how long
she would need it. His response, As long as necessary, left her feeling puzzled and unclear
of what the oxygen meant and how long she should use it. She felt her physician was being
evasive and trying to hide from her the fact that she would need oxygen for life. One
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participant thought that perhaps the reason she had not received the information was that her
condition was worse than she anticipated. She wondered whether her condition was so severe
that her doctor was afraid to speak with her about it. She equated the need for long-term
oxygen therapy with being "terminal and queried:
Maybe I am (terminal), maybe he just could not discuss it with me.
In terms of perceived need for information from health care providers, four questions came
up repeatedly.
1) What was the correct dose, or liter flow rate?
2) How long they would need it?
3) What could they do to get off of it in the future?
4) What were the side effects?
The "dose of oxygen, in terms of the flow rate was the most commonly identified
informational need. It was also a source of some internal debate. A number of participants
reported that they did not ever discuss their dose with their physician, but that the physician
left the dose to the oxygen company to determine. Some viewed the technicians with the
company as a potentially fallible source of information. Some also wondered why their
physician was not more interested in their dose. Participants whose oxygen was monitored
solely by the oxygen supplier were often wary of the dose and tinkered with their flow rate.
Many who had altered the amount of oxygen they used reported that they did not believe the
83


dose prescribed them was appropriate or that they didnt trust the oxygen companys measure
to accurately reflect their meed.
Participants opinions of tBteir physicians varied. One participant described a long process of
fighting and scrapping her- way to care. She felt as if she were in a constant struggle with her
doctors and the HMO in vwhich she was enrolled. Her diagnosis was summarily relayed to
her with little discussion o*r interest in treating it. As her symptoms developed and
progressed, she felt she ha*.d to repeatedly seek care and was only able to get the care she
needed by seeing other docctors within the system until one of them did the appropriate tests
to diagnose her.
Other participants held the-ir physicians in high regard. Some viewed their doctors as good
advocates and sources of imformation. These people often assumed a lot of responsibility for
educating themselves and vwere very pro-active in learning how to incorporate oxygen into
their activities. Those reporting a pro-active approach to their illness, who tried to anticipate
difficulties, described their- physicians as a trusted source of information.
Others were reluctant to dirscuss their problems with their doctor. Two participants
mentioned concerns about rtalking with doctors about use of oxygen that deviated from what
was prescribed. One was concerned that his doctor would go nuts if he knew how the
participant was using his oxxygen (the participant was using 5-6 times the prescribed flow
rate). Anothers concern \was that the doctor might take away the oxygen if he discovered the
discrepancies in the participants use and his prescription.
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Cast in this light, the patients' ability to self-regulate their illness was perceived as being in
conflict with their perception of their physician's wishes. The physician was not necessarily
viewed as their advocate, but as an authority figure who had the ability to take away a needed
resource. Even so, one of the participants who consistently deviated from his physician's
prescription described his physician glowingly and repeatedly mentioned the importance of
following his doctor's recommendations, even though the behavior he described was in direct
conflict with that recommended by his physician. About this he said:
To me the most important thing is to follow your prescription and do what the doctor
says. Do not deviate. If he tells you to use it all 24 hours, use it. And see if you can
sometimes do without it being on. Try it, but always have it on if you need it. Do
not deviate from what is prescribed.
In his view, the physician was a reliable, and trusted source on information. However, it was
incumbent on him to evaluate and apply that information as it seemed appropriate to his
situation. It was his role to evaluate the therapy day to day. and week to week. As he stated:
Try it and see. That is the only way you will learn and the only way you will find out
if you can survive part-time without it or if you can do it, or you can't. That is the
main, most important thing, to always go by what the doctors prescribe. Try to use it
less than what they say you need to and you will find out that you can do it.
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Another participant who consistently used his oxygen outside the parameters of the
prescription described little alliance with his doctor and in fact mentioned his physician in
this context, only in a comment about how negatively he would respond to the patient's
chosen pattern of oxygen use. It is apparent from both of these participants that the
information they received from their doctors was taken seriously, but was only a small part of
the information that they considered. Their own perceptions of their need and their personal
ideas of what benefits they received from oxygen were weighted more heavily and considered
perhaps more valid than the physician's. The physician's perspective and expertise was
scientific and generally applicable; their own perspective was synthetic, liberal, and personal,
incorporating the views of the physician that seemed personally applicable but also
incorporating other concepts and observations not encompassed by the physician's
perspective.
The notion of compliance." seen in this light, appears absurd. Fora physician to view the
participant's decision to use oxygen in this case, only relative to the physician's
recommendations, is ridiculous. To these participants, their deliberate deviations from their
doctor's prescriptions were based on their own empirically conceived sense of their own
need. Their self-selected pattern of use made more sense to them and was viewed as more
personally valid than their physicians. In neither case was the physician viewed in harsh
light or rejected outright; it was more the perception that the doctor did not have enough
information or didn't interpret the same information appropriately to make decisions
regarding the patients oxygen use.
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In summary, the physician played a small role in the narrative of illness and oxygen use told
by the participants of this study. The physician was always the source of the initial diagnosis
and of the oxygen prescription. In some cases the physician was viewed as a useful source
of information and a resource to use in understanding and coping with the illness and with
oxygen therapy. The physician was also a figure of authority who could delay the diagnosis
and access to oxygen, or who could take away the oxygen and limit the patient's ability to
self-regulate their illness. If the experience of these participants is representative, physicians
overlook many informational needs of their patients in terms of the diagnosis of emphysema
and the use of oxygen therapy.
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CHAPTER 8
PATTERNS OF OXYGEN USE
In the narrative of these participants' lives, the moment of the diagnosis of emphysema or the
moment of oxygen prescription are represented as simply that: a moment. In the context of
the broader narrative, they are moments of great import in the plot of a life, for after that
moment, in certain fundamental ways, things will always be different. This moment, or these
moments, represent a critical point in the life narrative, dividing the life cleanly into pieces of
before and after. After that moment, life is to be lived with a new companion in the form of a
container of oxygen. Before that moment, there was an freedom to life that most had never
considered: it was a time when decisions and movements occurred without any consideration
of this new companion and the needs it represented.
In her work with occupational therapists, Mattingly writes of emplotment (Mattingly, 1998).
Emplotment is the process through which events are linked to a greater narrative thread and
given meaning. Unemplotted events are meaningless, disconnected occurrences. Emplotted
events tell a story of cause and effect, of moral import, of purpose. Emplotted events create
a narrative that links the future and the past and explain and predict the trajectory of a life.
The same events can in one narrative tell a story of heroism and overcoming, and in another:
inevitable defeat against overwhelming odds. The difference is not in the events themselves,
but in the manner of their emplotment and the meanings assigned them. In emphysema
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