Sec. .sci. .Wrd. Vol. 30. No. 9. pp. 951-959. 1990 0277s9536,90 53.00 + 0.

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Printed in Great Britain. All nghts reserved Copyright c 1990 Pergamon Press plc

ON THE CREATION OF ‘PROBLEM’ PATIENTS

ANNE L. WRIGHT and WAYNE J. MORGAN
Department of Pediatrics, University Medical Center, Tucson, AZ 85724, U.S.A.

Abstract-Recent debates regarding clinical transactions oppose a macro-level approach which

emphasizes political, economic and institutional forces, and those analysts who consider patient
perceptions regarding illness to be major influences on the outcome of clinical encounters. This paper
utilizes both approaches to illuminate the interactions between medical personnel and ‘problem patients’.
The macro-level approach draws attention to the way power is negotiated and expressed in clinical
interactions, and to medicalization that gives priority to medical values and condemns patients who do
not act in accord with these values. The patient belief approach explores one of the major weapons in
the struggle for control, the disease model of illness. Use of both approaches permits a better
understanding of clinical medicine in these problematic interactions.

Key words-problem patients, macro-level analyses, patient beliefs, doctor/patient interaction

INTRODUCt-ION ing that such encounters reinforce current social

Two schools of thought have emerged recently
among medical anthropologists regarding the nature
of clinical transactions in industrialized societies.
The macro-level or ‘critical’ approach understands
“health issues in light of the larger political and
economic forces that pattern human relationships,
shape social behavior and condition collective experi-
ence” [I, p. 1281. This approach asserts that macro-
level processes, such as word capitalism, are the
dominant forces which shape clinical practice. Thus,
for Singer, “bourgeois medicine is not ‘thing’ or a
set of procedures and treatments so much as it is
a particular set of social relations and an ideology
that legitimizes them” [I, p. 1291. The second school
investigates patients’ beliefs and perceptions as deter-
minants of clinical encounters. This school focuses on
the meanings particular symptoms and illness have
for individuals, and how these meanings are trans-
lated into actions. Proponents of this school [2-51
have identified differing concepts of disease and
illness between patient and care giver as major
obstacles in the health care of patients. They suggest
that by eliciting and negotiating explanatory models
physicians can improve communication, understand-
ing and trust, thereby facilitating treatment [2].
The two schools of thought are often perceived
to be incompatible. Taussig [6, p. 91. for example,
suggests that attention to the peculiarities of an
individual case necessarily obscures the common
thread to clinical interactions, namely conflicts over
power and over definitions of illness. However, other
writers have successfully utilized data from individual
cases to illustrate how clinical interactions reflect
both larger social factors as well as the ideosyncracies
of relationships of particular doctors and patients.
Waitzkin [7] analyzes face-to-face interactions be-
tween doctors and patients to identify how these
contacts maintain macro-level patterns of oppression
and domination. He finds that ideologic messages
about the value of work and appropriateness of
family roles are more common in clinical interactions
than are exchanges of technical information, suggest-
arrangements. Likewise, Lock [8] interprets symp-
toms commonly experienced by Japanese women as
a means whereby women protest their lack of power
as well as individual social relationships. Their visits
to physicians provide convenient labels for illness, but
do little to alter the social causes of illness.
One way of investigating factors which influence
clinical interactions is by exploring encounters which
deviate from the ideal, which are in some sense
‘problematic’. Patients who come to be defined as
problem patients may be viewed as deviants, or
individuals whose behavior “violates institutional
expectations, that is, expectations which are shared
and recognized as legitimate within the social system”
[9, p. 61. Since the type of deviance which emerges
from a particular social context is contingent upon
the characteristics of the system [lo], the study of
problematic clinical interactions elucidates normative
patterns and values in clinical medicine, thereby
providing a key to understanding the system.
In this light, problem patients may be thought of
as being created by a variety of forces, some of which
originate and/or are reinforced at the macro-level
and some of which entail divergent beliefs. The case
studies of three individuals who were identified as
problem patients by a medical team are described
here to illustrate how such patients may be created.
The first type of patient considered here emerges in
response to the institutional structure: these patients
question aspects of treatment based on historical
developments rather than on the logic of their con-
dition. A second type of problem patient emerges
in reaction to power dynamics common in doctor-
patient relationships: they resist the dependence of
the patient role and struggle with their physicians for
control of their own care. Medicalization, defined
here as the imposition of medical values onto patients
who may have different concerns, can also create
problem patients. Finally, patients who operate
with divergent models of their illness and who use
these models to select treatments may be labeled as
problem patients.

951
952 ANNE L.
WRIGHTand WAY?*Z
METHODS
Research was conducted in a pediatric pulmonary
clinic at a university hospital. Participant observation
was conducted for several years, including partici-
pation in weekly staff conferences, observations in the
clinic, and general discussions with staff.
In addition. a more specific study was conducted
of problem patients. The staff was asked to identify
patients whose beliefs or behaviors were thought to
exacerbate their medical condition. After consent was
obtained from the patient, he or she was interviewed
in a structured, open-ended fashion. The staff in-
volved in the care of the patient were also interviewed
regarding their perceptions of the patient’s condition.
The ideas of all parties were elicited regarding cause,
pathophysiology, timing of exacerbations, course and
treatment for the patient’s illness, as well as other
issues and perceptions of care. Although they were
interviewed separately, both parties were aware that
the other would also be interviewed. In addition,
clinic visits were observed, and detailed notes were
taken regarding the behaviors and statements of the
staff and the patient. At a later time, the medical
record was reviewed for data regarding the patient’s
condition and perceptions of his/her behavior as
recorded by both nurses and physicians for inpatient
as well as outpatient visits,
A total of seven patients, both male and female,
were interviewed and observed over a period of
several years. Three patients were selected for dis-
cussion in detail here because they best illustrate the
processes whereby problem patients may be created.
The other four are not described because most of the
issues their problematic behavior raised are covered
in discussion of the cases which were selected for
analysis. In addition, three of the cases not selected
involved more complex psychological issues, and the
fourth child’s disease remitted spontaneously.
All of the patients described here have cystic
fibrosis (CF). Cystic fibrosis, the most common in-
herited fatal disease among Caucasians, is character-
ized by hypersecretion of viscid mucus in most organs
and systems. Its effects are particularly devastating
to the lungs, which may become filled with fluid,
and to the gastrointestinal system, where it can cause
severe malabsorption of nutrients. The course of
cystic fibrosis (see Table 1) is generally one of gradual
deterioration interspersed with severe exacerbations
which ultimately culminate in a pulmonary death.
Treatment of CF entails a variety of medications and
manipulations, and can be very time consuming,
occupying four or more hours per day in advanced
stages. Unfortunately, adherence to the medical
regimen does not result in immediate improvement in
health; rather,the most likely reward for compliance
is a lengthened life span.
*Certain other issues that ‘critical’ medical anthropologists
have raised appear to have little relevance to the case of
CF. As an inherited condition, CF cannot be attributed
to economic and social forces which have heen so
Persuasively discussed elsewhere [ 19. While CF is a very
expensive disease, financial coverage is generally avail-
able from a variety of sources which will reimburse
virtually any physician the patient chooses to see.
J. MORGAN
Table I. The pulmonary explanatory model of cystic fibrosis*
Causer Inherited.
Porhophysiologyr Mucus is thicker in structures such as the lungs
which excrete mucus. Poor clearance results in obstruction, as
well as chronic pulmonary colonization with pseudomonas and
staphylococcus. These infections cause both acute and chronic
damage to the lung which results in hypoxia and, ultimately.
right heart failure. Premature death results from combination of
obstructive lung disease and heart failure.
riming o/ exocerbdons: Several factors are involved: (I) the pro-
gressive nature of chronic disease. (2) an ‘asthmatic’ component,
(3) viral infections, which appear to help growth of bacteria, (4) at
very advanced stages, right heart failure causes fluid retention and
pulmonary edema.
Course: Highly variable; generally includes shortened life span and
alternating good and bad periods; predictability varies for each
patient.
Treatmenr:Depends upon whether treatment occurs on in- or out-
patient basis, but may include chest physiotherapy; antibiotics
(both oral and i.v.); high calorie diet, enzyme and vitamin
supplementation; bronchodilators; diuretics (considered
useful in
very late stages); supplemental oxygen; occasionally steroids.
*Obtained from an interview with one of the attending physicians.
See Ref. [ll].
MACRO-LEVEL
INSIGHTS
Structural elements
Many factors have been identified which influence
the doctor-patient relationship. Perhaps least studied
by anthropologists are the institutional forces which
originate in the way medical care is structured.
Lazarus [12, p. 491 has recently argued that research
should focus on how medical care is organized in
institutions, including public clinics, university
hospitals and health maintenance organizations,
since “the clinical setting... is an integral part of the
doctor-patient relationship, helping to determine
how people act and how much power the physician
sustains”. Problematic relationships with patients
may develop when care is organized in ways that meet
the needs of the system but which have unintended
consequences for patients.
Several aspects of the structure of care affect the
treatment of patients with CF.* One relevant aspect
of the institutional structure is that the clinic is held
in a teaching hospital: while the primary function of
the pediatric pulmonary clinic is to treat patients with
a variety of childhood lung problems, its second
function, which is reflected in its organization, is to
teach. On an average day, an ‘attending physician’
(senior physicians who have practiced for many
years), two ‘fellows’ (pediatricians being trained in
pulmonology), and an occasional resident will staff
the clinic. The role of the fellow is to collect infor-
mation through history and examinations, update
the chart, and communicate with other professionals
who are involved in the patient’s care. In contrast, the
attending supervises these functions and is ultimately
responsible for the patient’s care. The fact that clinics
are organized to facilitate teaching often creates
problems for patients: they see whichever fellow and
attending are ‘on’ at each clinic visit, regardless of
who has followed them in the past.
A second structural factor which affects the care
of patients with CF is that CF has been considered
a childhood disease: it is an inherited condition, so
infants are born with it and, until recently [14] life
expectancy was early childhood. Thus, pediatricians
 On the creation of ‘problem’ patients
rather than internists are trained in the course and
treatment of the disease. Even after they become
adults, CF patients are hospitalized on pediatric
wards: only 10% of CF centers nationally have a
separate adult CF program [ 151.The CF Foundation
and the centers themselves have discussed the wisdom
of this practice and have tried to work more closely
with internists. However, attempts to change this
arrangement have rarely been successful [15]. While
internists will see adult CF patients as a professional
courtesy, such patients are time consuming and rela-
tively few in number, which renders additional train-
ing and committment on the part of the internist
uneconomical. For their part, many pediatric pulmo-
nologists resist passing patients on to internists be-
cause of the years of investment in particular patients
and the necessity of relinquishing control.
One consequence of this arrangement is that when
CF patients are hospitalized they are admitted to
pediatric wards. Although many patients accept this
practice, several resist. One young woman, Nancy*
had been diagnosed as having CF elsewhere, and
‘came of age’ in a setting where adult CF patients
were admitted to adult wards. When she moved to the
research city and was to be admitted for her initial
‘work-up’, the pediatric staff refused to allow her to
go to an adult floor. Although several of the pediatric
fellows sympathized with her desires, she was told
that if she wanted to be treated here, it would have
to be on the pediatric ward. It was felt that staff
on the adult ward were insufficiently trained in
the pecularities of CF and that admission there
would create havoc with established procedures and
relationships. Finally, after presenting her case to the
lower status fellows and attendings, she approached
the head of the center, who gave permission to be
treated on the adult ward.
Nancy’s objections to admission on a pediatric
ward focused on the ‘we know best’ attitude which is
inherent in pediatric settings. The staff on pediatric
wards are accustomed to dealing with infants and
young children who are unable to understand pro-
cedures or to comprehend the long term conse-
quences of treatments; pediatric patients are also less
likely to know their rights and to object to procedures
which are inconvenient, or seemingly arbitrary. For
example, patients on the pediatric ward are routinely
awakened to be weighted at 6:00 a.m., a practice
not followed on the adult ward, although they also
obtain daily weights. Such treatment sometimes
engenders the childish reaction of rebelliousness in
older patients. Nancy noted that the relationships
between pediatric attendings and housestaff differ on
adult and pediatric wards: internal medicine house-
staff are more likely to question routine procedures as
arbitrary or potentially problematic to an individual
patient. Nancy ultimately left the center seeking care
first with an adult pulmonologist and then with an
internist. However, her choice was not motivated by
the fact that the clinic was staffed by pediatricians,
but rather was due to the lack of continuity of
care: given the way this academic pediatric clinic is
structured, she couldn’t have her own doctor.
*All names used are pseudonyms.
953
Power and control in clinical interactions
Critical medical anthropologists have suggested
that the practice of medicine reflects and reinforces
the type of relationships which characterize a capital-
ist society. Taussig, for example, compares the treat-
ment of patients with the rationality of commodity
production: medicine wrests “control from the
patient and define(s) their status for them by first
compartmentalizing the person into the status of
patient hood, then into the status of thing-hood as
opposed to that of a mutually interacting partner in
an exchange” [6, p. lo].
Writing from a legal standpoint, Katz [16] has
characterized the social relations and ideology
entailed in doctor-patient interactions as that of
‘caring custody’, which implies a disregard for
patients’ nonmedical needs, intelligence and abilities
to make decisions. For their part, patients are
expected to submit in ‘silent and blind trust’ to
doctor’s orders. Physicians’ authority is maintained
with reference to the esoteric nature of their
knowledge, the need to protect patients from full
understanding of the devastating effects of their
disease, and a presumed identity of interest between
doctor and patient. Their authority is protected by
the claim of altruism and a mask of infallibility. AS
Katz states [16, p. 2251, “faith, hope and reassurance
have too often served physicians’ need to maintain
authoritarian control, to hide uncertainty and to
facilitate patients’ regression to more infantile
modes of function in order to encourage nonverbal
interactions and compliance.”
Katz 1161 and the macro-level anthropologists
approach the issues of power and control in clinical
interactions from different standpoints. Neverthe-
less, both might predict that patients who expect to
actively determine their own care will be considered
problematic. This notion is supported by two consul-
tations, described here at length, which were observed
on the same day with one patient. They illustrate how
patients may be labeled a ‘problem’ if they fail to
submit to a physician who expects to be the authority.
The patient, Jane Anderson, was 40 years old.
She was not diagnosed as having CF until she was
31, at which time she was seriously ill. Jane felt that
the regimen of antibiotics, physiotherapy, digestive
enzymes, bronchodilators and, occasionally, gluco-
corticoid steroids which were prescribed at that time
saved her life and greatly improved its quality by
identifying appropriate medications. Since that time,
periods of relative health have alternated with severe
exacerbations which have required hospitalization,
supplemental oxygen and steroids.
Interviews with the physicians revealed that no
one felt Mrs Anderson was obtaining optimal care.
All four of the physicians interviewed believed that
Mrs Anderson’s condition would improve if she used
more bronchodilators and less diuretics. Diuretics
are sometimes used for CF patients with advanced
disease if they have profound heart failure and
edema. Patients with more moderate disease rarely
receive diuretics; doses prescribed for such patients
would be about one-third of what Jane takes. One
physician felt Jane should do more physiotherapy,
take intravenous antibiotics for a longer period of
time and, possibly, come in earlier for a ‘tune-up’.
954 ANNE L. WRIGHT and WAYNE J. MOKGAN

Table 2. Summary of physicians’ and patient’s behaviors

lnteracum wth Dr Jones (Fellow) Interaction with Dr Dav (Attending)

Ph.wiciun Behorior Ph.kkm Behavior

1. Listened IO patient’s perception of the problem. I. Began examination in silence.
2. Elicited patient’s perceptions of EBUSC. 2. Defined patient’s condition and specified how it should
3. Suggested connections between patient’s and medical model. be managed.
4. Stated the patient’s questions were reasonable. 3. Later. elicited the patient’s perception of her symptoms.
5. Discussed value of one medication (diuretic) in terms of
patient’s model.

Portent’s Behavior
I. Asked questions. I. Talked to fellow as if attending was no1 there.
2. Stared the doctor knew more than she did. 2. Disagreed with doctor’s interpretation of her condition.
3. Negotiated regarding timing of certain drugs. 3. Refused the proposed plan.
4. Cited supporting statements from another subspecialist.
5. Interrupted the ohvsician.

All physicians noted, however, that the changes they These two encounters demonstrate two different
suggested in her therapy might not alter the course of styles of interaction. Dr Jones appeared to be respon-
her disease although the interim symptoms might be sive to the patient’s beliefs and concerns and her
affected. needs to socialize. In contrast, Dr Day expected to
The first physician to see the patient was Dr Jones, control the encounter and to have the patient
a woman in her first year of Fellowship. During the submit to his authority. Dr Day was trained during
interaction (Table 2), Mrs Anderson appeared to be a time when “the trust of the patient in the complete
a normal patient. In their encounter, Dr Jones elicited competence of the doctor and the dependent desire to
Mrs Anderson’s perception of the problem, including be ‘taken care of’ by the doctor.. . (were) considered
its cause, asked when she took her medications, and essential aspects of the relationship” [17, p. 971. As
gave credence to her beliefs by explaining the medical Burnham has documented [18], societal expectations
model and drug effects in her terms. In response, of a doctor’s demeanor have changed dramatically in
Mrs Anderson phrased one question in terms of “you the past two decades. While there has been a great
would know more about this,” and was generally deal of pressure for doctors to provide more infor-
cheerful and open with Dr Jones. mation and form a partnership with their patients,
In the second interaction with the attending from both inside [16] and outside the profession,
physician, Mrs Anderson became a problem patient. there is a wide range of beliefs among patients as well
Dr Day began the check-up with a silent examination as physicians as to what constitutes an ideal relation-
during which he had the patient move according to ship. Mrs Anderson herself stated that she likes to be
his instructions. The first time he spoke, he defined treated as an equal, to participate in decision making.
her condition in strong terms, saying he was con- Another important difference between these inter-
cerned about her ‘falling apart’ in the afternoon and actions is that the physicians involved have different
gave her an agenda to handle the problem. He also status. As a first year fellow, Dr Jones was in the
criticized the amount of diuretics she was taking since process of learning about the care of patients with CF
the utility of diuretics in the care of CF patients is and had little authority over Mrs Anderson’s care.
unproven and no edema had been documented in her Thus, being a sympathetic listener and not forcing
case at any time.* treatment issues was appropriate. In contrast, Dr
Mrs Anderson’s response was defensive and Day treated Mrs Anderson for many years. Defining
involved breaking several unspoken rules: the severity of her condition from a medical stand-
point and outlinmg a treatment plan was consistent
Dr Day stated “We need to check your electrolytes. I think
that you’re taking too much diuretic at one time.” Jane said with his status as the one who was ultimately respon-
that she didn’t agree. Dr Day felt that after checking the sible for her care. Thus, the stylistic differences reflect
electrolytes, the best solution would be to skip one dose of status differentials: Dr Jones as obtainer of infor-
the diuretic. mation and facilitator, and Dr Day as the one who
At this point the patient said “No.” She planned to take decides and is responsible for the patient’s care.
a small dose in the morning and the rest in the afternoon These interactions also illustrate that control is
as before. In fact. she stated, the cardiologist had said that somewhat negotiable. In the first encounter, Mrs
it was more effective that way.
Anderson was a ‘good’ patient, despite the fact that
Dr Day said that he was uncomfortable with that solution
and that he was not convinced that she needed the diuretic.
she stuck to her own beliefs about the appropriate
The patient contradicted him, saying “I need it.” The dosage of various medications. (Dr Jones was also a
physician said “I’m quite sure you’re dried out; you’re ‘good’ doctor from the patient’s standpoint in that
overdoing it.” The patient stated. “Well, I do seem to have she listened and did not try to force the patient to do
thin ankles.” Again the physician stated “You need lo cut what the medical team felt was best.) In the second
down on the amount,” but Jane insisted she still needed case, Jane became a problem patient by violating
100 mg. rules of appropriate behavior. First, she volunteered
unsolicited information which made sense in terms
of her concerns and explanatory model but which
*Dr Day is an empiricist who believes that if diuretics were were irrelevant to the medical model. She frequently
useful, their effect would have been ‘proven’: in addition, interrupted and contradicted Dr Day, countering his
diuretics may cause long term side effects including suggestions with her own, which she supported with
severe kidney damage. statements from other subspecialists. During parts of
 On the creation
Dr Days’ examination, she chatted with the fellow.
Through all these actions Mrs Anderson becomes a
‘bad’ or ‘ungrateful’ patient, since “good patients’
follow doctor’s orders without question” [16, p. I].
Similar types of behavior are evident in the medical
record. During hospitalizations Mrs Anderson makes
numerous attempts to control her care by requesting
certain drugs, asking to have the medications given
according to a certain schedule, requesting that her
intravenous line be replaced by someone who is
‘good’ at it, refusing to submit to certain procedures
(such as chest X-rays) and the administration of
certain drugs, and generally taking an active part in
determining treatment. During one hospitalization,
she specified to the nurse the rate at which the
intravenous fluid should drip, as well as the amount
of medications to be put into the fluid.
Returning to the consultations, Dr Day sub-
sequently realized he was not being effective and
changed his approach by asking the patient her
perceptions of one symptom. At that point, the
interaction became more amiable. A discussion of the
intervenous antibiotics followed:
The patient questioned the effectiveness of the antibiotics
generally and of the specific antibiotic used. The physician
said, “The one you’re on is the most (effective) for you. I
think we need to persevere with the antibiotics. In fact I’m
worried about you. Even though you sound good there are
a lot of chronic things going on.” The patient stated “But
1 was great until one month ago.” Dr-Day said, “Check
back in a week. Consider going on the antibiotics for
another two weeks.” The patient said, “Well, I may just put
my foot down about it.” The physician said, “Keep an open
mind. (Your infection is) not overly sensitive to these drugs.
You have a lot of lung disease and this is the time of the year
when you should be doing the best.” The patient said, “No,
the humidity is the problem, it really beats me down, in fact,
that’s why I’m here.” The physician said, “For all those
reasons, it is important to keep on the antibiotics. Please
consider it. After all, you want to hit winter in good shape.”
Jane’s behavior is clearly responsive to the physicians’
behavior. Although she remained unconvinced by his
arguments, she did not counter with flat contradictions
and she became more polite and conciliatory. For the
first time, they negotiated the timing of her diuretics.
Thus, as Young has pointed out, “Knowledge that
determines medical behaviors is constituted from a
flow of intentions, observations and expectations; it
is continually reformulated as the actor monitors his
own behavior and its effects” [19, p. 3801.
Medicalization at an indicidual level
Most analyses of medicalization, the process
whereby physical states or behaviors are defined as
the appropriate focus of medical intervention, have
been conducted at a macro-level. Studies have
focused on how the medical profession has created
‘markets’ for its services by designating certain
groups of people as amenable to treatment. For
example, while pregnancy was once considered a
normal part of a woman’s life, it has been redefined
as a disease state, requiring a range of procedures,
drugs and medical attention. Others [20] have illus-
trated how medicine has been substituted for the legal
system as the agent of social control, when unsavory
illegal behaviors such as drug addiction become
redefined as ‘sickness’.
of ‘problem’ patients 955
Medicalization may also be investigated at the
individual level, using clinical data to illustrate how
the values espoused by medicine eclipse the patients
needs and values, and how concern for the patients’
health becomes a justification for value judgments
about his/her behavior. As Zola has pointed out [21,
p. 4901, while the moral condemnation which used to
surround illness has disappeared, the character of
individual patients is still open to evaluation based on
what they do about the disease. Consequently, the
focus of condemnation has shifted to the issue of
responsibility: a patient’s character becomes evident
through his/her behavior and how it relates to
what the physician believes is appropriate. Zola lists
a series of noncompliant health related behaviors
(breaking appointments, failing to follow treatment
regimens, etc.) which place people into a disreput-
able group, which elicit a variety of judgments.
“Judgements are made, not in the name of virtue or
legitimacy, but in the name of health” [ibid]. It is
through this process that the patient, rather than the
interaction, becomes a ‘problem’.
Conflicts over values surfaced with regard to
Susan, a 20-year-old women with CF, who had
recently had a baby. The staff was concerned that
she was losing weight, seemed very tired, and was
generally not taking care of herself. Although some
of the staff felt she would benefit from hospitalization
for a ‘tune-up’, Susan refused to come in. However,
she would often call during off-hours to request that
a prescription be telephoned to a pharmacy, thereby
avoiding seeing the physician. Her medical status had
seriously deteriorated as the result of her pregnancy,
and the staff felt that her lack of compliance with
their recommendations was further exacerbating her
condition.
The prevailing theme in the interview with Susan
was ‘normality’. Her life had changed dramatically
in the past few years during which she had married,
become a mother, and with her husband, taken
responsibility for their family’s financial support. It
was very important for her to show that she was a
‘normal’ adult who could do the things a normal
adult could do: hold a job, be a good wife and
mother. Thus, in addition to keeping house and
taking care of the baby, she worked as a typist 3 days
per week. Many of the treatments for CF were
incompatible with the goal of ‘normality’. As Susan
said, “Try to get romantic with a tube in your belly
or with oxygen!” Chest physiotherapy is prescribed
as an important means of controlling pulmonary
secretions, but it is time consuming and clearly
marks the person as unhealthy. Hospitalization is the
antithesis of being normal-an admission not only
of abnormality but of the ultimately fatal nature of
her condition. Susan felt that focusing on CF was
depressing and that having a poor attitude could
affect her health negatively. Thus, for Susan, de-
emphasizing CF and its concomitant treatments was
the only way of maintaining her self-image as a
‘normal’ person.
The unspoken value which informed the staffs’
reaction to Susan’s behavior was to protect her
health and longevity, a value which “ has dominated
the discussion of the proper treatment of many
diseases, and obliterated the consideration of all
956 ANNE L. WRIGHT and
other values” [16, p. 961. Longevity may be particu-
larly valued for patients with CF because the course
of the disease is extremely erratic and unpredict-
able-the disease allows some patients to survive
years with a lung function almost incompatible with
life, and yet quickly strikes down others who seem to
be doing well. Thus, longevity is a more meaningful
goal than improving values on lung function tests or
other measures of the patient’s condition.
The real problem in this instance is that neither
staff nor patient had objectively discussed treatment
goals. The result was that the staff felt that Susan was
denying her disease and acting irrationally, particu-
larly because as a mother, she “had a lot to live for”.
For her part, Susan was distrustful of the staff, feeling
that they judged her harshly and tried to push her
into more aggressive treatment which depressed and
demoralized her, which ultimately had a negative
effect on her health. Katz has argued [16] that real
informed consent can occur only when the risks
and benefits of treatment are discussed in light of
the needs, goals, and values of patients. Further,
he emphasizes [16, p. 1021 that seemingly irrational
behavior is not automatic grounds for condemnation
of the patient: “Reason and unreason define human
beings’ essence. Manifestations of the latter should
not readily and prematurely lead to presumptions of
incompetence.”
PATIENTS BELIEFS
The preceding sections illustrate that the way
medical care is structured creates problematic
relationships of a certain type between patients and
their physicians. These relationships entail the
struggle for control over the logistics of care, over
styles of interaction as well as the treatment plan, and
over what values and goals are appropriate. What
these analyses neglect, however, are the perceptual
and cognitive factors which influence the interactions,
and how conflict over the correct version of reality
objectifies the struggle over who controls the patient’s
body and future.
Mrs Anderson, discussed previously with reference
to the struggle for control, was also considered a
problem patient as the result of her beliefs. She
explained her symptoms, her periods of susceptibility
and her reactions to particular medications in terms
of a model of CF which differs dramatically from the
medical model. While she agreed with the medical
model in terms of the cause and course of CF, her
model (Table 3) emphasized the retention of water
as the cause of pulmonary exacerbations, and as the
ultimate cause of death (‘drowning’).
Consequently, treatments were evaluated in terms
of how they affect water retention. For example,
intravenous antibiotics were considered to be only
‘usually effective’ because they increase water reten-
tion as the result of sodium in the solution. (The
physicians, however, consider these drugs to be the
‘big guns’, powerful against pulmonary pathogens,
and used only if the patient’s condition worsens
significantly.) In contrast, Jane considered oral anti-
biotics, which are only partially efficatious, to be
“always effective in keeping things under control”,
a notion denied by her doctors. While physiotherapy
WAYNE J. MORGAN
Table 3. Mrs Anderson’s explanatory model of cysttc fibrosis
Cause: Inherited.
farhophqG_~log.r:The major organs ‘deteriorate’. especially the stom-
ach and lungs. The pseudomonas (an organism livtng in the lungs
of CF patients) creates mucus which blocks the airways, inhibiting
breathing.
Timing of eracerbottons: Occur as the result of water retention
which is associated with menstrual periods, high humidity, high
salt intake, stress.
Course: Good and bad periods alternate, which are very
unpredictable. and the disease is ultimately fatal.
Treatment:
Diuretics-help eliminate water
Oral antibiotics
Intravenous antibiotics
these work on the pseudomonas
Percussion and draina&-loosens secretions
Bronchodilators-open airways
Watch diet and take enzymes
is a hassle, Jane realized over a 2-year period that
“either you do it or you choke to death”. Most
revealing was Jane’s evaluation of the diuretics which
permit her to eliminate water: “I’d drown without
them”.
Although physicians are often unaware of patients’
explanatory models [4], both physicians and staff
were well-informed of Mrs Anderson’s beliefs, Her
beliefs, particularly those concerning diuretics, con-
flict with those of the medical model. Thus. argument
over the correct view of reality occurs in virtually all
interactions with medical personnel. For clinic visits,
she is quoted in the medical record as saying:
My lungs are heavy with all this humidity.
My abdominal bloating is worse when the CF is bad.
I’m feeling poorly with the recent rains.
The monsoons, my period and the high humidity is just
beating me down.
Similar statements occur during hospitalization:
All that fluid build-up caused my shortness of breath.
I’m having a little trouble breathing. It feels like I have too
much water. Can I have some more Lasix (diuretics)?
Having her own model permitted Jane to have some
control over the definition of how sick she was, and
provided a framework within which she controlled
the administration of her medications.
The physicians felt that greater acceptance of the
medical model would facilitate accurate assessment
of her condition and more appropriate treatment.
They were particularly concerned that her model, as
well as other aspects of her beliefs, was used to deny
the reality and severity of her disease. For example,
by focusing on ways to modulate water retention,
Jane neglected treatments such as bronchodilators,
which could significantly improve her condition.
Further, the model she adopted, which was con-
sidered extremely aberrant, allowed her to justify the
dangerous levels of diuretics she took. Nevertheless,
the physicians did not try to convince her of the
inaccuracies of her model, believing that it provided
a measure of hope through her perceived ability to
influence her condition. Thus. a stalemate ensured.
DlSCUSSlON
This paper has explored the value of macro-level
and patient belief perspectives in analyzing the
clinical interactions and beliefs of several problem
 On the creation of ‘problem’ patients
patients and their doctors. Problematic interactions
were studied because they reveal aspects of the
medical system: problem patients are those who
do not fit into the institution as it is organized,
who espouse different values and beliefs, and who
deem different behaviors appropriate. Macro-level
approaches suggest that an understanding of the
structure of care, of power dynamics within the
doctor-patient relationship and of the assertion of
medical over individual values, would be useful in
such an analysis. The patient belief approach, in
contrast, has proposed that divergent beliefs as
reflected in differing explanatory models may cause
problematic interactions.
Aspects of the structure of care for CF patients
are clearly factors which can create problematic
interactions. Lack of continuity of care is endemic
to teaching hospitals, where patients are cared for
by novice students and doctors who are receiving
training and where the senior physicians are often
unavailable, due to a variety of competing clinical,
research and administrative responsibilities. This
aspect of the institutional setting may foster [12]
problematic relationships through inconsistencies in
treatment plans, in interpretations of the severity
and significance of illness, and in personal relation-
ships of the patient with the variety of doctors.
More specific to CF is the fact that adult patients
in most centers are treated by pediatricians. Like
Nancy, some adult patients find it insulting to be
hospitalized with children, whose conditions, situa-
tions and needs differ dramatically form their
own. The arrangement infantalizes adult patients,
making it even more difficult to assert control in
their care. It may thus encourage patients to deny
their disease, to leave it in the hands of the ‘experts’,
who are then expected to provide a miracle when
needed. Finally, the medical needs of adults differ
from those of children and pediatricians have less
experience in the diagnosis of adult conditions such
as cervical or breast cancer. Clearly, practices which
originate in the history of treatment of a particular
disease can have profound effects on the care of
patients.
Macro-level analysts have also highlighted power
relations in medicine. It is a truism that physicians
have substantial political, financial, and social power
both as individuals and as a profession over patients.
Physicians justify their power on the grounds that
they are ‘responsible’ for patients’ health. Such power
is symbolized in the doctor-patient interaction by
asymmetrical rules regarding touching, initiation of
conversation, expression of perceptions of the illness,
and determination of the content of the discussion.
Strong has documented [22, p. 1281 the use of varied
types of selective attention whereby doctors “control
almost every aspect of the consultations’ shape,
sequence and timing”. Maintaining control over the
interaction permits the doctor to decide what is best
for the patient as well as to influence the type of
behavior that is considered appropriately deferential
for the patient. It is the physician who is in the
position of labeling the patient as a ‘problem’. In the
words of one of the physicians interviewed, “Doctors
like patients to take their medicine and then say
‘Thank you’.”
957
According to Stein [23, p. 1331 “Clinical success
within the doctor/patient relationship is often tacitly
equated with the patient’s relinquishment of the
disease to the healer. As a result, the physician’s effort
to control the disease may turn into an attempt
(usually unsuccessful) to control the patient”. Main-
taining control is sometimes advocated by physicians
in the belief that “a better appreciation of medical
knowledge will only make patients anxious and con-
fused” [16, p. 851; patients who realize the extent of
medical uncertainty may be immune to the ‘placebo’
effect of the physician as provider of hope. While
common to many conditions [24], uncertainty is
particularly problematic in the case of CF given the
fatal and unpredictable nature of the disease, and
the problematic nature of compliance. In addition,
because cystic fibrosis, like hypertension, ‘allows’
patients to suspend treatments with minimal immedi-
ate consequences, patients have difficulty believing in
medical treatments since there is no personal evidence
that they work. Thus, issues of personal and pro-
fessional uncertainty color clinical interactions,
particularly with patients who question the doctor’s
authority and the efficacy of treatments.
However, while the physician has more power, it
is far from complete. Patients use behavior as a
means of asserting control, commonly by violating
the rules for ‘good’ patient behavior. For example,
Mrs Anderson did not accept the medical model, and
indicted her disagreement by interrupting, contra-
dicting, and ultimately refusing the proposed therapy.
Other patients used deviant behavior to assert control
over their care, including not showing up for surgery,
noncompliance with medications, not ‘hearing’ the
physician’s educational messages, not giving the
proper information or doing so at the wrong times,
postponing hospitalization, to their convenience, and
requesting particular drugs. Such strategies may be
particularly common among patients with chronic
diseases, who develop a high level of knowledge
about the system and their own condition, which they
may use to achieve their own goals and to participate
more actively in decisions regarding their care [25].
Such strategies may fulfill a cohesive function [26]:
since patients are unable to challenge the system,
given the asymmetrical power relations and the
medical model which locates problems in individuals,
their only recourse is to deviate from the sick role by
breaking small, symbolic rules. This permits the
relationship to continue, and the contract to be
unbroken, despite profound tensions. Such behavior
may permit the blowing off of steam before an
explosion occurs: “A certain amount of deviance,
disparaged but not rigorously repressed, may per-
form a ‘safety valve’ function by preventing the
excessive accumulation of discontent and by taking
some of the strain off the legitimate order” [27].
Mrs Anderson’s case also illustrates that power
and the desire to control vary from physician to
physician. depending on such factors as age, gender,
pesonality, status, training, and historical context.
Varied styles of interaction elicit vastly different
reactions in patients. The patient discussed here was
cheerful and friendly in one encounter but became
contradictory and negative in the interaction with a
physician who desired greater control. Despite the
958 A.%NEL. WRIGHTand WAYNEJ. MORGAN
fact that one interaction was more pleasant, neither
physician was particularly successful getting this
patient to comply. It should also be noted that the
second physician altered his approach once he real-
ized it was unsuccessful. Clearly. control is relative,
fluid in response to cues in the interaction, and
negotiable in terms of individual aspects of the
treatment plan.
Turning to the third critical issue, Susan’s case
illustrates how medical values may eclipse the
patient’s goals, and when the goals are incompatible,
the patient’s character may be questioned. The major
goal of the staff, which was not articulated, was
longevity; when Susan’s behavior indicated disregard
for this value, her rational understanding of her
condition became suspect. In fact, Susan simply
had alternate goals of treatment, goals which were
accepted by the staff once they were articulated.
In this case. medicalization takes the form of the
assumption that medical values are the only correct
ones. This type of medicalization can only be resolved
by a sincere committment to conversation [16] be-
tween doctor and patient. As Stein put it [23, p. 1351,
“The more closely . . . physicians listen to their
patients, the more thoroughly they incorporate the
contexts of the patient’s and the family’s life cycles
into their clinical thinking, and the more clearly they
distinguish between their own difficulties and those of
the patient, the better they can address the ‘needs’
behind the ‘wants’, and the better they can defuse the
conflicts arising from the touchy issues of compliance
and control.”
The utility of explanatory models has been ques-
tioned by macro-level medical anthropologists and
others, because models are often fluid, ambiguous
and provide only partial explanations of beliefs [12].
However, in this case, maintaining a different defini-
tion of the illness serves as one of the patient’s major
weapons in the struggle for control. Lock [8, 91 has
documented how the body may be used as a symbolic
means of expressing dissent by groups of people.
Although few patients have models of their condition
which are as strongly defined as Mrs Anderson’s,
this case illustrates that individuals also use concepts
of the body to symbolize their disagreement with
the cultural construction of proper doctor-patient
relationships, to express their determination to con-
trol their perceptions of their condition and to justify
their health seeking behavior. Had the explanatory
model not been elicited in this case because of the
potential limitations of this approach, the major
weapon in the struggle for control would have been
missed.
However, clearly more is going on in the inter-
action described than a lack of congruence in
explanatory models between doctors and patient.
Lazarus [13, p. 441 emphasizes that beliefs cannot
be studied independently of the behaviors of both
patients and medical personnel. Further, it would
be naive to try to resolve the conflicts in the relation-
ship simply by attempting to change the patients’
explanatory model: conflict would certainly continue
at another level.
In summary, relationships between doctors and
patients are complex, particularly for patients with a
chronic condition, Analysis at the macro-level drew
attention to the impact of institutional practices on
clinical transactions, to the power dynamics which
emerge due to differences in social status and level of
expertise between the two parties, and to the assump-
tion that medical values are the only appropriate
ones. Although patients may be considered problem-
atic for varied reasons, the constant theme in the
interactions described here is a struggle for greater
control, for more influence in decision making, and
for the system to respond to each individual’s unique
needs and values. Use of the patient belief approach
illustrates how patients may symbolically resist the
social contract and the implications of lower social
status by maintaining alternate interpretations of
their condition, which permits them to justify ‘non-
compliance’. Thus, the struggle for control occurs
at a symbolic level, here with reference to ‘health’
and ‘water’, although the underlying issue concerns
control.
This analysis suggests that expanding the gaze of
clinical anthropology to include political and social
influences on the clinical interactions can be valuable.
In turn, more cognitive analyses may reveal how
macro-level issues, such as power and control, are
enacted and modified within the framework of a
particular interaction. As Cassell stated [28, p. 244:
“If we want to truly understand powerful groups, in
order to ameliorate or alter aspects of their behavior,
we must understand who they are, (and) why they
are that way.” It is only with this level of understand-
ing that we can provide accurate, meaningW, and
incontrovertible critiques of the system.
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