Illness behavior and the sick role in chronic disease

Sot SC! Med. Vol. 16. pp 1397 lo 1404. 1982

‘X77-95W82 I5 1397~0X$003.0()/0 CopyrIght 0 1982 Pergamon Press Ltd

Printed in Great Britain. All rights reserved

ILLNESS

BEHAVIOR AND THE SICK CHRONIC DISEASE THE

CASE

OF

MULTIPLE

DAVID C. STEWART

Department

of Sociology

and

ROLE

IN

SCLEROSIS*

THOMAS J. SULLIVAN

and Social Work, Northern Marquette, MI 49855, U.S.A.

Michigan

University,

Abstract-This paper describes the findings of a study of the pre-diagnosis illness behavior of 60 individuals with multiple sclerosis. The findings of this study expand on those of prior research in the following areas: (I) more diversity and conflict occurs in lay and professional definitions of the initial symptoms of multiple sclerosis: (2) the doctor-patient relationship is characterized by greater definitional and role dissensus; and (3) multiple sclerosis patients take a more active role in the therapeutic encounter. On the basis of these findings, the applicability of prior research findings and concepts to the experiences of individuals with chronic illnesses such as multiple sclerosis are questioned. In addition, it is suggested that the structural-functional approach which postulates that the illness experience IS governed by explicit normative expectations has achieved prominence because the focus of illness behavior research and theorizing has been on acute conditions and on limited stages of illness behavior process (before seeking professional help or the post-diagnosis period) where the model appears to fit the description. That is. since phystcians can readily dtagnose and treat most acute illnesses, the entire illness behavior process appears to be characterized by definitional and role clarity, consensus and harmony. It is proposed that. in contrast. when physicians have difficulties diagnosing and treating an illness, as is the case in multiple sclerosis and many other chronic illnesses. the entire process is more problematic. The situation is less normatively controlled and as a result. social dissensus and disharmony are likely to occur. It is argued that sick role behavior and the therapeutic encounter involve a process ignored by structural-functional theorists: role negotiation, The behavior of patients and physicians IS shaped as much by a situational bargaining process as by normative expectations.

Illness behavior has been a focus of theoretical development and empirical research in the behavioral sciences for several decades. Illness behavior refers to “the ways in which symptoms are perceived. evaluated and acted upon by a person who recognizes some pain, discomfort, or other signs of organic malfunction” [l]. Most studies in this area have focused on individuals with acute organic illnesses, while chronic illnesses have received less attention. In many studies. in fact. the focus of research has been on not a particular type of disease but rather on response to any symptoms. In addition. virtually all studies focus only on certain phases of the illness behavior process. especially lay definitions of illness and the doctorpatient relationship after a diagnosis has been made. It has long been recognized that the findings and concepts deriving from studies of patients’ responses to acute diseases may not be applicable to the experiences of individuals with chronic illnesses [2]. The typical biomedical characteristics of these two types of diseases differ considerably. Most acute illnesses

*The material III this arttcle represents part of a larger project funded by a grant from the National Institute of General Medical Science (NIH Training Grant GM-12231. An earlier version of thts paper was presented at the Midwest Sociological Society Meetings m Minneapolis. MN on I I April 1981. We would like to express our apprectatton to Dr Andrew Twaddle for his helpful comments on an earlier version of this paper. 1397

are self-limiting; the individual is sick for a short period of time and then either recovers or dies. Furthermore. the classic symptoms of these illnesses (e.g. fever, nausea. chills, pain) are, from their onset. serious, incapacitating and to most Americans, highly recognizable. Finally. since acute illnesses have been the focus of scientific attention, successful diagnostic techniques and treatments are available. In contrast, most chronic diseases are characterized by their permanent and continuing nature: the initial symptoms are often mild. nondisabling and vague: the symptoms are often not easily recognizable by lay people or most physicians; and effective diagnostic and treatment strategies do not exist for many chronic diseases. Given these differing biomedical characteristics, it can be assumed that patients’ responses will also vary. Thus. existing findings and concepts focusing on symptom recognition, help-seeking behavior. and the therapeutic encounter among the acutely ill may not be directly relevant to the prediagnosis- behavior of the chromcally ill. While these differences have been recognized for at least two decades. little has been done to document them or to delineate their theoretical implications. These issues are addressed in this paper. using findings from an investigation of the prediagnosis illness behavior of individuals with one chronic illness-multiple sclerosis. On the basis of these findings, the applicability of prior research findings and concepts to the experiences of individuals with chronic illnesses such as multiple sclerosis will be assessed.

DAVID

1398 ILLYESS

BEHAVIOR

Ii% ACUTE

C. STEWART

and THOMAS

ILLSESS

Beginning with Talcott Parsons’ model of illness the illness experience has commonly been viewed as socioculturally controlled: the indlvldual’s responses to illness and the doctor-patient relationship are viewed as governed by explicit normative expectations [3,4]. The sick person’s response to illness is to adopt the societally recognized and defined ‘sick role’ and to contact a physician to legitimize his action. The doctor-patient relationship is generally viewed as functional. predictable, and harrnonious because each of the parties is assumed to know and understand what behavior is expected of both themselves and the other. While the doctor-patient relationship involves reciprocity in the form of behavioral expectations. the power of the parties is not equal. Due primarily to their technical expertise, physicians are the dominant and active participants. determinin! whether it is appropriate that a person adopt the sick role, whereas the patient is expected to be subordinate and relatively passive. The limitations of Parson’s structural-functional model have been widely recognized, especially its simplicity and failure to account for variations in the behavior of both patients and physicians [S-S]. At each stage of the illness behavior process, the patient’s decisions, actions and interactions are not uniform, as Parsons appeared to suggest, but highly variable. Many variables-the nature of the illness, psychological social, cultural and situational factors-have been analytically delineated that might produce variation in the sick person’s responses [9-131. However, most empirical research on illness behavior supports the basic assumptions of the model [ 141. In most studies, the process beginning with symptom recognition and ending with diagnosis is described as rapid and straightforward and the decisions, actions and interactions of participants in episodes of illness are described as culturally or normatively determined. This is well illustrated in the conclusions of Edward Suchman’s study of illness behavior [l.5]. First. most afflicted individuals self-diagnosed their symptoms as illness and contacted a physician within one week after ‘their recognition. Second. most patients obtained an acceptable professional diagnosis and began a successful treatment regimen following their first visit to a physician. Third. nearly all patients cooperated with their physicians in carrying out their prescribed regimen and, consequently, returned to health. Finally, at each stage. most patients received support for their decisions and actions from their lay associates. These findings led Suchman [I61 to conclude that: behavior,

general. the description of the ‘natural htstory’ of illness m our society would support a positive appraisal of the pathways and routtnes established by the medical system for the care of the ill.. the seeking and tinding of the medtcal care appears to take place without too much difficul ty”.

“In

Put another way, Suchman’s findings, along with the findings of most other empirical studies. suggest that the illness expeiience is governed by well-defined behavioral expectations. as Parsons indicated.

J. SULLI\S ILLUESS

BEHAVIOR

-\hlOVC

SCLEROSIS

PATIEZTS

\lL’LTIPLE

The investigation of pre-diagnosis Illness behavior among people with multiple sclerosis enables us to assess the impact of the biomedical characteristics of disease on patient’s and physician’s behavior. It also provides further documentation for the manner in which illness behavior in chronic disease varies from the Parsonian modeLGiven the biomedical characteristics of multiple sclerosis described above. we would expect the illness behavior process to be more complex. More specifically. we would expect that:

(I) Defining the symptoms will be a more difficult process for individuals with the symptoms of multlple sclerosis, and definitional disagreements between afflicted individuals and their relatives and physicians will be more common. (2) Help-seeking behavior. sick role adoption. doctor-patient and patient-significant other relationships will be complicated due to the physicians’ difficulties in diagnosing the disease. (3) The social and emotional impact of the prediagnosis period will be greater for individuals with multiple sclerbsis.

Such variations in the illness behavior of the chronically ill have been suggested In the literature. However, research. and most analyttcal assessments on chronic illness. have focused on the post-diagnosis doctor-patient relationship. the post-diagnosis sick role, and the post-diagnosis coping mechanisms of patients-not on the social processes beginning with symptom recognition and ending with the diagnosis [ 17-191. This period-a time of contact with medical professionals but without authoritative legitimation for the sick role-has been virtually ignored. The stages that are most often the focus of research are precisely the stages at which social consensus and definitional clarity are likely to exist. The focus on these stages has led investigators to ignore the process by which normative consensus is achieved. the role of both physicians and patients in that process. and the consequences of the failure to achieve consensus. Thus. the research on the prediagnosis behavior of multiple sclerosis patients has important theoretical implications for traditional models of illness behavior. When illnesses are acute. adoption of the sick role appears to be ;I straightforward process and patientpractitioner relationships governed by explicit normative expectations. Definitional and role clarity, consensus and harmony do appear to exist. The experiences of multiple sclerosis patients and other chronically ill individuals. however. suggest that illncss behavior can be. and often is. less normatively controlled. rigid. and static. Situational and interactional processes influence the actors’ decision-making more than has been prevtouslv recognized. Symptom definition. help-seeking behavior. and role consensus and legitimation are problematical processes that are ‘worked on’ by the participants. In short. illness behavior is often shaped as much bq ;I negotiation process as by normative restraints.

Illness behavior and the sick role in chronic disease RESEARCH QUESTJONS AND METHODOLOGY

The study described in this paper sought to discover how multiple sclerosis patients responded to the biomedical characteristics of their disease and to use these findings to compare their behavior to reports of the behavior of the acutely ill. The focal research questions were: (1) How do patients and their family members interpret and respond to the initial symptoms’! (2) What criteria are used by lay individuals in defining their symptoms as indicative of illness or wellness’! (3) What is the nature of interaction between afflicted individuals and their lay associates concerning the symptoms’! (4) At what point and for what reasons do patients consult physicians’! (51 How do physicians interpret the symptoms? (6) What is the nature of doctor-patient relationships over time’! The data on these questions presented in this paper were obtained as a part of a larger study that the senior author conducted on the adjustment of multiple sclerosis patients and their families throughout the course of their disease. The study was done in the San Francisco Bay Area over an 18-month period from 1975 to 1977. The data were gathered through in-depth interviews with 60 patients and many of their immediate family members. The interview schedule included a series of standardized. open-ended questions focusing on the individuals’ interpretations of symptoms and their actions and interactions in response to them during the pre-diagnosis period. Since all the individuals in this study were diagnosed as having multiple sclerosis. the data obtained on the pre-diagnosis period were entirely retrospective. The inherent limitations of retrospective data were minimized somewhat by cross-checking the patients’ reconstructions of this period with the reconstructions of their close relatives. The sample consisted of 20 white men, 20 white women and 20 black women [20]. These persons, whose average age was 42 years. had suffered from multiple sclerosis for an average of I4 years. Fortyeight were marrted. 11 were divorced and 1 was single. In terms of religious affiliation. 39 were Protestants. I6 were Catholics and the remaining five indicated no affiliation. Fifty-eight patients had graduated from high school and 9 were also college graduates. The primary economic providers in the patients’ families were employed in vvhite-collar occupations. skilled trades. or semi-skilled trades. RESL’LTS

Among the patients in this study. the diagnosis of multiple sclerosis was seldom easily or rapidly reached. It took an average of 5f years for the individuals to be correctly diagnosed. During this time. the illness behavior of the patients could be divided into three distinct temporal phases. based on the patients’ self-diagnoses and the actions they produced. These phases. through which almost all individuals passed.

I.799

were termed the nonserious phase, the serious phu.ve and the diagnosis phase. During the nonserious phase, the patients did not define their symptoms as illness and took minimal actions in response to them, The serious phase. which is emphasized in this paper, began with the patients’ re-definition of their symptoms as illness and ended with their tentative diagnosis of multiple sclerosis. This was the main period of medical care contacts. The diagnosis phase is the period in which the patients underwent the final tests that resulted in their multiple sclerosis diagnosis. The great duration of the pre-diagnosis period (the nonserious and serious phases) and the patients’ changing interpretations of their conditions during this time resulted largely from the vague and mild nature of their symptoms and the lack of specific medical diagnostic tests for the disease. The most common symptoms individuals experienced were numbness and tingling sensations, coordination problems, double or blurred vision and general fatigue. The mild and invisible nature of these symptoms resulted in the patients’ defining them as nonserious and, thus, not contacting a physician, for a considerable length of time. The lack of medical diagnostic tests resulted in their having difficulties obtaining correct diagnoses once they defined their symptoms as serious and began contacting physicians. The nonserious Interpreting

phase the symptoms.

Nearly all patients (85”,1 viewed their initial symptoms as ‘nonserious’. They maintained this outlook for an average of 3 years. Such persons saw little reason to be concerned because their symptoms were not greatly discomforting, persistent, visible, or disabling and most importantly, could usually be explained in nonmedical terms. For example. Franklin’s [21] lack of concern about his initial symptoms, and his belief that his job (installing radios in airplanes) was the cause of his symptoms, was typical of patients’ interpretations: When I was diagnosed. my doctor told me that I had probably had MS for five years. He said that the numbness in my ankles and the early bouts of double vision and clumsiness were my first symptoms.. At the time, I never thought much about them at all. They came and then they’d go away and I’d forget about them. I just thought they were a side effect of my work, I did precision work in cramped spaces in airplanes and it had always been hard on my legs and eyes. All the guys who did this complained of the same types of things. Instead of seeing their symptoms as indicative of serious illness, these patients viewed them as aiimenrs. minor illness. or as symptoms qf other [reared illnesses. irtjuries or pregnancies. They used one. two. or all three of these rationales to explain their different symptoms or to explain the same symptom at different periods. The first and most common explanation for symptoms given by patients was that they were simply ailments. i.e. slight changes in health status caused by nonmedical conditions. Symptoms were attributed to: personal situations (e.g. ‘overwork’. ‘social stress’): personal limitations. such as an innately weak constitution (e.g. ‘I’ve always been sickly’): poor personal health care (e.g. ‘out of shape’. ‘rundown’): or Simply

I100

DAVID C. STEWART and THOMAS J. SL-LLI\-\L

‘getting older’. Ailments bvere perceived as within the range of normal bodily functioning. and it was assumed that most adults had some type of ailment (e.g. chronic headaches or backaches). They were felt to be lareelv . . incurable and. hence. simply to be lived with. Second. patients often explained their symptoms as being minor illnesses. Minor illnesses were similar to ailments in that they were assumed to be within the range of normal adult health. They differed from ailments since they were defined as actual illnesses. although illnesses so mild and commonplace that a physician was usually not needed. Patients and their relatives or friends typically diagnosed these problems as ‘arthritis’. ‘iron deficiency’. ‘poor circulation’. ‘a pinched nerve’. ‘bursitis’. ‘inner ear problems’, ‘ulcer’. or ‘poor or weakening vision’. The final common explanation for their symptoms was that they were a side effect of other illnesses. injuries. or pregnancies for which they were being treated. Included were such medically defined afflictions as joint problems. tendonitis, bursitis. arthritis. high blood pressure, influenza. bad teeth, eye cold. eye strain. trick knee and injuries to various bones. muscles. or the eyes. Rr,sponsr ro rlw s~~mptoms. Most patients did take some action to alleviate their nonserious symptoms. The action taken most frequently was home treatments: simple procedures deriving from popular beliefs about the treatment of mild afflictions. These included behavioral changes (e.g. increased or decreased physical activity), over-the-counter medications (e.g. aspirin. eye drops, rubbing alcohol) and vitamins. Half of the individuals also consulted a physician. In nearly all cases, they discussed their symptoms with a physician with whom they were already having treatment for other illnesses. The physicians either supported the patients’ self-diagnoses or could tind nothing physically wrong. At this point in the disease trajectory. such diagnoses were acceptable because patients also believed that nothing was seriously wrong. Normative consensus was easily accomplished because both physician and patient accepted the same definition of the patient’s condition.

All patients eventually rejected their initial interpretations and began to view their symptoms as representing acute physical illness. Typically, symptomatic changes (i.e. increased severity, persistence. or visibility) were the main reasons for this definitional shift. This began the primary period of medical care contacts. Most patients went to several physicians and were misdiagnosed a number of times before eventually receiving a correct diagnosis of multiple sclerosis. The misdiagnoses naturally produced uncertainty. confusion. and frustration and often caused strain in the patients’ relationships with physicians and with relatives and friends. Re.vporlse to .s~wptoms: medico/ cure cwntucts. Once they considered their symptoms to be serious, the patients VIsIted physicians. Although uncertain about their illness. they mitially assumed that it could be readily diagnosed and cured. One patient confessed:

I didn’t thmk I had any disease that doctors didn‘t knot\ much about. I guessI \\;1snave. When ttus all began. I thought doctors kneu about most all dlsenses and could

cure them. This assumption rarely proved to be correct. In the aggregate. the patients spent an average of almost 2; years before receiving an accurate diagnosis. During this time. they consulted 227 different physicians for a total of 407 diagnostic appomtments. not countmg follow-up appointments for treatments and tests. The outcome of most (75”,,) patients‘ trips to physicians were ultimately unacceptable and inaccurate diagnoses. Most patients here often variously diagnosed during the serious phase. The most common types of physical illnesses attributed to the victims were neurological diseases and muscle. bone. and joint diseases. Generally. less serious diagnoses (e.g. eye infection. bursitis. inner ear infection. neuritis) preceded the more severe misdiagnoses (e.g. brain tumor, myasthenia eravis. muscular dystrophy and arthritis). Patients misdiagnosed as psychosomatically ill usually received vague diagnoses. such as nervousness. anxiety, depression or stress. Patients underwent a wide assortment of therapeutic regimens based upon their misdiagnoses. Prescription drugs such as tranquilizers. cortisone-like drugs (prednisone. ACTH). pain pills and antidepressants were the main treatments they received from physicians. Other treatments included physical therapy or traction. psychotherapy. vitamins and minerals and even surgery. Impact of the serious phase. Since the symptoms did not respond to treatments, the patients‘ faith in their physicians’ diagnoses were usually short-lived. This placed them in the difficult position of viewing themselves as sick but not being socially defined as such. This not only heightened their diagnostic uncertainties, but also produced alterations in their relationships with their physicians and relatives. Physicians and relatives seldom supported the patients’ self-diagnoses as sick. This definitional conflict produced a stressful situation for patients which had important health consequences. Symptoms of stress often became more troublesome to the patients than the MS-related symptoms. The problems could only be resolved by obtaining an acceptable diagnosis and for most of the patients this became a focus of their thoughts and actions. The patients’ response to their physicians’ unacceptable diagnoses and treatments was to view their physicians in increasingly negative terms. Their initial positive views of their physicians changed over time. As their initial confidence in the physicran’s skills waned. they began to see them as ‘evasive’, ‘nonsupportive’. ‘insensitive’. ‘uncaring’. and ‘dishonest’. Mrs Harmon reRects the views of many patients: I went to seven or eight doctors In less than two years. I’d tell them about my pins-and-needles feelings. or my numbness. or my weak arms and they‘d all do the same thingnothing. 1 really got upset with those doctors. They’d usually just say that my problems were normal for a woman my age 125) and things llke that. And I’d get really uptIght because they would Just give me a talium and not try to find out what was really wrong. Some of them thought I was going otf my rocker They thought I was

Illness hchavior

and the sick role in chronic

imagining the problems.. One of them just threw up his arms and said he didn’t know what was wrong with me. Now isn’t that some way for a doctor to act. I got so 1 didn’t believe any of them. I knew something was wrong and felt they could lind out if they would just try.

Physicians simply were not meeting the patients’ expectations of caring and curing. Physicians appeared not to be concerned about them or to have the skills to ameliorate their physical problems. As a consequence, patients changed their expectations of themselves as patients. They viewed it as necessary to take a more active role in defining what the problem was and in deciding what should be done. No longer passively accepting their physicians’ assessments. they felt their own diagnostic participation was essential. To this end, they encouraged their physicians to take further action; they ‘shopped’ for concerned and skilled physicians; and they attempted systematically to diagnose themselves. The basic way that patients displayed their more active role in the therapeutic relationship was by returning to their physicians after they had been initially (and incorrectly) diagnosed and treated. Fiftyseven of the 60 patients eventually rejected their initial diagnoses and returned to their physician desiring further actions. Implicitly or explicitly. the patients were challenging their physicians’ diagnoses and encouraging and sometimes demanding further tests and new diagnoses. Furthermore, for 42 of the patients this became a long-term process in which they repeatedly visited their physician to question the latest in a series of diagnoses they had received. While each encounter often produced further actions on the part of physicians. these actions seldom led to a diagnosis that was satisfactory to the patients. Only I5 patients were diagnosed as having multiple sclerosis by their original physician or by a physician they were referred to by their original physician. The remainder felt it necessary to ‘shop’ for a new physician. The second way patients displayed autonomy and aggressiveness in therapeutic encounters was to search for a new physician who they felt could resolve their problems. Forty-five patients went to at least three different physicians and 23 went to six or more before finding one who acceptably and accurately diagnosed them. On the average. these patients contacted 6$ physicians. While each visit produced increasingly negativje feelings towards physicians. most remamed convinced throughout that they could find a ‘good’ physician. During this phase. most patients also tried to diagnose themselves. They began reading popular and scientific medical books and consulting friends and relatives with medical or nursing training hoping to find an illness that fit their symptoms. Interestingly, 10 patients self-diagnosed themselves as having multiple sclerosis. Thts was done to assist physicians and also to relieve anxieties. While in a few cases selfdiagnoses did produce the desired results. m most it did not. Physicians usually did not take their diagnoses seriously. Many patients were told by physicians that they were ‘reading too much’ or that they should ‘leave their medical care to them’. This self-diagnosis is an interesting ‘move’ in the negotiation process because it violates a very power-

disease

1401

ful normative expectation held by physicians namely, that it is physicians alone who have the technical expertise to diagnose illness. Physicians respond very strongly to this normative violation because it threatens the very foundation of their authority, This dimension of the doctor-patient relationship is, for most physicians, an absolutely ‘nonnegotiable’ item. In addition, the patients’ self-diagnoses often increased their uncertainties and stress. The reason for this was that most patients changed their initial interpretations of their symptoms from curable acute illnesses to more severe or often life threatening illnesses (e.g. multiple sclerosis, cancer. myasthenia gravis, amyotrophic lateral sclerosis). These definittons were based not only on their self-diagnoses. but also their negative evaluations of physicians’ evasiveness and lack of explicit diagnoses. As one patient stated: For the last year I thought I was dying of stomach cancer. I thought

the

numbness

and

tingling feelings in my (45 pounds in nme months) were sure signs of cancer. 1 told my doctor but he wouldn’t say or do nothing. I thought he knew it was

stomach and my big loss of weight cancer but was afraid to tell me.

In terms of the doctor-patient relationship and sick role adoption, the process characterized by these MS patients in the serious phase is quite different from what occurs with most acute illnesses. The seriousness and persistence of the symptoms motivate patients to refuse to accept the physician’s judgment regarding their condition. They continue to pursue a definition of the situation consistent with their interpretation of their symptoms. They pester physicians to change their diagnosis and even bring in supporting medical information to bolster their position. The rapid emergence of social consensus and legitimacy that underlies the functional approach to the sick role is not present. In fact, quite the reverse, MS patients commonly take a more active and aggressive stance in their efforts to get their definition to prevail. Following the physicians’ unacceptable diagnoses, changes also occurred in the patients’ relationships with their relatives and friends. At the beginning of the serious phase. patients reported discussing their symptoms frequently with immediate family members (i.e. spouses and parents) and a few of their closest friends. However, this level of interaction was maintained throughout the serious phase by only one-third of the patients. The remaining patients discussed their symptoms less frequently with their relatives and friends as the phase progressed. The reason for this was that the patients assumed that everyone was tired of constantly hearing their same complaints. Most patients also felt they received less support from their relatives and friends over the course of the serious phase. Compared with the patients. relatives and friends accepted the physicians‘ diagnoses much more frequently and viewed the patients’ conditions as mild physical or psychosomatic illnesses. As a result. the patients had as much difficulty convincing their relatives and friends that they really were sick as they did their physicians. When they complained about their symptoms or took it easy on days when their symptoms were particularly severe. they felt that others viewed them as hypochondriacs or as malingerers.

DAVID C.

1302

STEWARTand THOMAS J. Sr

The changes

in the patients’ interaction with and relatives and friends are illustrated In the following statement by Mrs Willis:

support

from

their

I discussed mc problems quite a bit at first with my husband. and my mother and a few friends. But after awhile, I got tired of complaining and they were getting tired of hearing the same old things. so I just kept it to myself. Other people think You’re crazy when You’re always com-

plaining about strange thmgs and the doctors can’t find nothmg wrong. I know my husband and most of the rest of rhem thought it was all m my head. They usuallY wouldn’t say that to my face. but I knew what they were thinking When I’d say something to my husband, he’d say all You do is complain. You’ve always been a complainer-so I quit complaining. The rmotionui

impact

oft-o/e

negotiation

It has been well documented

that the social environment can have substantial impact on one’s health status (see Refs [22,23] for summaries). One element of this social environment is the role structure surrounding the individual. Beginning with Durkheim‘s investigation of suicide and continuing to the present. there is substantial evidence that the ambiguity and the degree of integration in a person’s role structure can have an effect on health status. Other studies have focused on the degree to which uncertainty in defining situations can produce physiological arousal that may have detrimental health consequences (e.g. [24]). The multiple sclerosis victims in this study found themselves-until they were finally diagnosed-in a very ambiguous situation in which they were unable to accomplish social consensus and an integrated role structure. They were pushed, on the one hand, by the increasing seriousness and discomfort of their symptoms toward an effort to adopt the sick role. They were prevented from successfully adopting the sick role, on the other hand. by the diagnostic uncertainties. the refusal of physicians to legitimize their sick role adoption and the negative reactions of relatives and friends. They found themselves in an ambiguous and uncertain limbo-they were not allowed to assume the social role that their physical symptoms seemed to propel them toward. The outcome was abnormal amounts of emotional conflicts and tensions for almost all the patients. Feelings of frustration, worry and intermittent periods of depression were nearly universal. Over half of the patients also reported experiencing more severe psychological problems. Then most common symptoms were frequent periods of depression, anxieties, moodiness, and irritability. Less frequent emotional problems-r side effects-included social withdrawal (9 patients), difficulty falling asleep (7 patients), weight loss of more than 30 pounds (7 patients), regressive behavior (4 patients), mental confusion and memory loss (3 patients), increased alcohol consumption (3 patients), suicidal thoughts (2 patients) and stomach aches (I patient). The types of problems these patients reported experiencing are illustrated in the following statement by Mrs Adams:

1 was m bad shape emotionally.

I got so I was depressed

and worried all the time, I thought for sure it was a brain tumor. and I didn’t know if others were hiding it from me

LLIM~

or If they just didn‘t care enough to bellrxe me. I turned into a child. I was rotally Hrapped up in myself and m! problems.

I didn‘t mitnt to see other

people.

I Just wanted

to be alone, At the same time. I started gettmg stomach aches that were diagnosed as colitis.

terrible

Eventually. some physicians began to suspect that the patients had multiple sclerosis or a related neurological disease. This suspicion resulted either from the patient contacting a physician during a dramatlc acute attack of symptoms suggestive of multiple sclerosis, or simply by the patient consulting a phystclan experienced with multiple sclerosis. At this point. nearly all the patients were hospitalized (for an average of 3 weeks) for a final series of tests that within 6 months usually resulted in a multiple sclerosis diagnosis. During this diagnosis period. nearly all the patients reported a reduction m stress. Even the diagnosis of multiple sclerosis and the realization that they were permanently ill produced little immediate emotlonal impact on the patients. They gave four reasons for their positive reactions. First. they were pleased to finally have a name for their symptoms. Second. the patients received greater social support from their relatives, friends. and physicians who. often for the first time, indicated that they were entirely certain the symptoms were real. Third. for patients who had thought they were terminally ill. the diagnosis of multiple sclerosis relieved their fears that they were going to die. Finally. most were very optimistic about the future course of their illness. This resulted from their physician’s unrealistically optimistic prognoses. According to patients. physicians stressed the possibility of remissions. mild cases. and the development of a cure for multiple sclerosis. Mrs Irving’s reactlon was typical:

I was so glad to find out I had MS. Then I knew I wasn’t dying and knew what I had to cope with. I could also finally say ha-ha to all these people who thought it was all in my head.. _. MS didn’t frighten me because I thought my condition would never get any worse. MY doctor told me a lot of research aas bemg done to find a cure..

I was just uaitlng

for the c‘ure to be discqvered.

The experience of these MS patients durmg the prediagnosis and diagnosis phases suggests the importance of a type of iatrogenic disease not frequently discussed: disease resulting from the stress of a doctor-patient relationship that is characterized by ambiguity and a lack of integration. latrogenic disease is commonly limited to physical conditions caused by the treatmem process. Our study suggests that behavioral scientists might fruitfully investigate the dimensions of the so&l rehtiord~ip between patient and doctor that contribute to a diminution in the patient’s health status. Although we were unable to quantitatively measure the extent of this impact. it seems clear from our interviews that it occurred with almost all patients. CONCLUSION

Summar)

This study demonstrates ations

in

illness

characteristics

behavior

of chronic

some

of the

specific

vari-

due to the biomedical illnesses such as multiple

Illness behavior and the sick role in chronic disease sclerosis. Compared to prior studies, defining symptoms, help-seeking. sick role adoption and the doctor-patient relationship were more complex for multiple sclerosis patients and as a result, they suffered more emotional and social conflicts. To include chronic illnesses such as multiple sclerosis within the domain of illness behavior, a wider range of symptom definitions and the potential for definitional and role disagreements must be considered. The major findings of this study that are different from much existing research on illness behavior are the following: 1. Due to the relatively mild and vague nature of the initial symptoms of multiple sclerosis, a great deal of diversity and conflict occurs in lay and professional interpretations of the symptoms. 2. Lay individuals recognize an intermediate state between health and illness which might be termed ‘pseudo illness’ (i.e. ailments and minor illnesses) that does not usually lead to medical care contacts. 3. While virtually all patients view physicians positively and seek them out as soon as they define themselves as ill, patients will reject physicians’ diagnoses and treatments when they appear ineffective to them. 4. The result of this is a lack of diagnostic consensus between the doctor and patient. and this typically extends to the sick individual’s relationships with relatives who usually accept the physicians’ assessments. 5. The patient’s response to this dissensus is typically to take a more active role in the diagnostic process which changes the nature of the doctor-patient relationship. Their aim is to assist the physician in diagnosing their condition. 6. The situation of definitional and role conflict is very stressful for most patients and often leads to a variety of psychosomatic symptoms. These symptoms are ameliorated when the patient is acceptably and accurately diagnosed as having multiple sclerosis which also resolves the social conflict. Thus. surprisingly, the diagnosis of multiple sclerosis usually resolves more psychological stress than it creates. Theorefical

implicatioru

Conceptualizations of illness behavior have assumed that, once people recognize they are ill and seek medical attention, the physician quickly diagnoses the illness. the patient receives authoritative legitimation for the sick role and treatment is initiated. Because of the nature of acute illness which has been the focus of most studies, this view of illness behavior appears to be accurate. Normative clarity and consensus are assumed to exist in the doctorpatient relationship and social interaction is assumed to flow smoothly. These assumptions do not appear to pertain to some aspects of illness behavior among multiple sclerosis patients or, we suggest. the illness behavior of patients with many other chronic illnesses. especially during the period we termed the ‘serious phase’ (when patients defined themselves as sick and sought out physicians to obtain an acceptable diagnosis that would legitimize their claim to the sick role). Prior research on these processes. in support of the structurBl-functional perspective, has suggested that

140.7

Professional legitimation of the sick role is straightforward and that the physician-patient relationship is characterized by a high degree of definitional and role consensus and harmony. The underlying reason for this is that physicians can readily diagnose and treat the types of illnesses that have been studied-acute illnesses. In contrast. when physicans have difficulty diagnosing and treating the illness, as is the case in multiple sclerosis and many other chronic illnesses, the entire process is more problematic and cannot be explained solely in structural-functional terms. The situation is less normatively controlled and as a result social dissensus and disharmony occur. The therapeutic encounter clearly involves a process downplayed by structural-functional theorists: role negotiation. The behavior of patients and physicians is shaped as much by a situational bargaining process as by normative expectations. The legitimation of the sick role and patient-practitioner consensus emerge only after a lengthy bargaining process. The physicians’ ultimate legitimation of the patient’s claim to the sick role was in part dependent on the patient’s ability to negotiate effectively. The theoretical perspective that appears best suited to the study of illness behavior among the chronically ill is not structural-functionalism, but instead the ‘negotiated order theory’. In this view, the role relationship between a physician and patient is not a static, rigid element of social intraction determined by sociocultural learning (although it is clearly influenced by that learning). Rather, it is a problematic relationship that must be continuously ‘worked on’ by the participants. As Day and Day have stated: In contrast to the structural-functional and rational-bureaucratic theories . the negotiated order theory downplays the notion of organizations as fixed, rather rigid SYSterns which are highly constrained by strict rules. regulatlons, goals, and hierarchical chains of cornman& Instead, it emphasizes the fluid, continuously emergmg qualities of the organization, the changing web of interactions woven among its members, and it suggests that order is something at which the members of the organization must constantly work [Xl. In our investigation of patients with multiple sclerosis, we were able to observe the manner in which this role negotiation occurred between patient and physician. Each person was attempting to maintain the definition of the situation they felt to be appropriate, and ultimate legitimation and consensus arose in part because of the negotiation process. Physicians are in an extremely powerful position in the therapeutic encounter because of their ultimate control of legitimation and thus, consensus. This control rests on the physicians’ ability to diagnose and treat the symptoms presented. In illnesses such as multiple sclerosis where the diagnosis is problematic and effective treatments do not exist, physicians’ position is threatened. They may not recognize the symptoms and thus, be incapable of legitimizing the patient’s claim to the sick role. Even if physicians suspect multiple sclerosis. they may be unwilling to legitimize the patient’s claim because they are uncertain of the correctness of the diagnosis due to the lack of specific diagnostic tests. In this situation. physicians may opt to delay informing the patient until

I404

DAVID C. STEWART and THOMAS J. SULLIVAN

more clinicalevidence is collected. Delaying the diagnosis appears to have several benefits from the phys-

ician’s point of view. and in fact, this strategy is routinely suggested in medical texts on multiple sclerosis. Thus, in one text, the author states: Even if MS is considered possible. there is a natural reiuctance to make the diagnosis because nobody likes to be the bearer of bad news and, m any case. there is no certain Way of confirming it. Nearly always everything soon subsides and is forgotten or ignored. At present. there is no particular virtue In establishing an early diagnosis [26]. The most obvious benefit of delaying the diagnosis to physicians is that it allows them to collect more data and consequently, decrease the risk of misdiagnosis. At the same time, physicians also postpone the difficult personal and professional task of bearing the bad news that the individual has a severe illness that medical science can do little about therapeutically. What is not clearly indicated in the medical literature on multiple sclerosis is when the physician should inform the patient. This decision appears to be left largely to the physician’s discretion. Clearly, the quantity of clinical evidence and the severity of the patient’s symptoms are important considerations. However, as our study has indicated, it also depends, in part, on the patient’s interactional skills. The patient’s ability to negotiate can play a role in convincing the physician that symptoms are severe or that the costs of not legitimizing the sick role will be high. Patients can assist the physician by gaining knowledge that allows them to present their symptoms in a way that make them more recognizable to the physician. Patients also control costs in this situation in a number of ways: their persistence can be very time-consuming and aggravating to physicians; they can hint that legal action might result if a physician misses or withholds a diagnosis; or they can seek diagnoses from other physicians with the implied threat that the previous physician’s inadequate diagnostic skills will be discovered. These factors clearly seem to play a role in the physician’s decision to diagnose multiple sclerosis and thus, legitimize the patient’s claim to the sick role. These conclusions also have applied implications for medical practice. When physicians assume that there is no advantage in providing an early diagnosis, they’ are ignoring the social and personal implications of the situation from the patient’s point of view. They are placing the patients in the difficult position of feeling very sick, but not being socially recognized as such. As we have illustrated, this situation is productive, in many cases, of severe stress for patients that may lead to serious emotional problems. Physicians should consider this when deciding whether or not to delay informing a patient of their tentative diagnosis.

REFERESCES D. and Volkart E. Stress. illness behavior 1. Mechanic and the sick role. 1~. SWIO/. Rr~r 25, 52. 1961. G. and Bauman B. Dimensions of the sick 2. Kassebaum role in chronic illness. J. Hlth SW. Eehar. 6. 16. 1965. 3. Parsons T. Tile Socrc~l S!,.srem The Free Press. Glentoe. IL. 4. Parsons T. and Fox R. Illness. therapy and thr modern urban American Family. d. SW. ls.~es 8. 31. 1952. 5. Suchman E. Stages of illness and medical care. J. H/r/l /IWI. B&r. 6, 114. 1965. 6. Kasl L. and Cobb S. Health behablor. Illness behavior. and sick role behavior. ilrc/~.s e~~rir. H/r/l 12. 246. 1966. 7. Twaddlk A. Health decisions and sick role variatmns: An exploration. J. H/t/l SW. Brhu~~. 10, 105. 1969. .IIeti. 8. Fabrega H. Toward a model of illness behavior C[ire 6, 470. 1973. 9. Diversities in conceptions of health and 9. Bauman physical illness. J. fflfk sm. Brlttrr. 2. 39. 1969. M. H. A contribution to the 10. Szasz T. S. and Hollender phdosophy of medicme: The basic models of the doctor-patient relationship. AW/I.S IW@T~. .tlrd. 97. 5X5. 1956. Il. Kasl L. and Cobb S. op. cit. 12. Mechanic D. Medicui Socioloyy. 2nd Edition. The Free Press, New York. 1978. 13. Twaddle A. and Hessler R. A Soc~oloy.~~oj’Healrh. C. V.

Mosby Co.. St Louis. MO. 1977. 14. Arluke A.. Kennedy L. and Kessler R. C. Re-exammmg the sick role concept: An empirical assessment. J. Hlih sot. Behuo. 20. 30. 1979. 15. Suchman E. op. (‘Ic. 16. Ibid.. p. 171. M. H. “p. c’~f. 17. Szasz T. S. and Hollender 18. Kassebaum G. and Bauman 9. op. (il. 19. Gallagher E. Lines of reconstructlon and extension m the Parsoman sociology of illness. In Parient.s. Phrsiciuns. L& Illness (EdiTid by Jaco E. G.), 3rd Editlon. DD. 162-182. The Free Press, New York, 1979. 20. i.‘his sample was drawn to assess sex and ethnic differences in the impact of multiple sclerosis. Data on these topics are not presented m this paper because significant differences did not occur in the patients‘ general patterns of prediagnosis illness behavior. 21. All personal names in this paper are pseudonyms. ‘2. Kaplan H. 9. Social psychology of disease. In Hum/hod of’Medicu/ Socioloyy (Edited by Freeman H. E. er ul.), 3rd Edition. pp. 53-70. Prentice-Hall, Englewood Cliffs. NJ. 1979. 23. Graham S. and Reeder L. G. Social epiderrnology of chronic diseases. In Hrrntibook of Medictrl Socirdoy~~ (Edited by Freeman H. E. er rrl.). 3rd Edition. pp. 71-96. Prentice-Hall, Englewood Cliffs. NJ, 1979. 24. Kaplan H. 9. Studies m sociophysiology. In Pmenrs. Phwicium cd Illnrss (Edited by Jaco E. G.), 2nd Ed]tion. pp. 8696. The Free Press, New York. 1972. 25. Day R. A. and Day J. V. A review of the current state of negotiated order theory: An appreciation and a critique. Social. Q 18, 132, 1977. 26. Mathews 9. Multiple Sclero.si.\: The Furs. pp. 35-36. Oxford University Press. Oxford. 1978.