Toombs meaning of illness 1987

S. KAY TOOMBS

THE MEANING OF ILLNESS: APHENOMENOLOGICAL APPROACH TO THE

PATIENT-PHYSICIAN RELATIONSHIP*

ABSTRACT. This essay argues that philosophical phenomenology can pro-vide important insights into the patient-physician relationship. In particular, itis noted that the physician and patient encounter the experience of illnessfrom within the context of different "worlds", each "world" providing ahorizon of meaning. Such phenomenological notions as focusing, habits ofmind, finite provinces of meaning, and relevance are shown to be central tothe way these "worlds" are constituted. An eidetic interpretation of illness isproposed. Such an interpretation discloses certain essential characteristics thatpertain to the experience of illness, per se, regardless of its manifestation interms of a particular disease state. It is suggested that, if a shared world ofmeaning is to be constituted between physician and patient, the eideticcharacteristics of illness must be recognized by the physician.

Key Words: phenomenology, patient-physician relationship, illness-as-lived,habits of mind, relevance, eidetic.

My interest in exploring the nature of the patient's and thephysician's understanding of illness has grown out of my ownexperience as a multiple sclerosis patient. In discussing my illnesswith physicians, it has often seemed to me that we have beensomehow talking at cross purposes, discussing different things,never quite reaching one another. This inability to communicatedoes not, for the most part, result from inattentiveness or insen-sitivity but from a fundamental disagreement about the nature ofillness. Rather than representing a shared reality between us,illness represents in effect two quite distinct realities, the mean-

S. Kay Toombs, M. A, Graduate Student, Department of Philosophy, Rice University, Houston, TX77030 U.S.A.

The Journal of Medicine and Philosophy 12 (1987), 219-240.© 1987 by D. Reidel Publishing Company.

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ing of one being significantly and qualitatively different from themeaning of the other.

In the first part of this essay I shall argue that phenomenologycan provide some important insights into this fundamental disa-greement between physician and patient. In particular, pheno-menology discloses the manner in which the individual activelyconstitutes the meaning of his experience. I shall discuss thephenomenological analysis of experiencing with reference to suchconcepts as focusing, habits of mind, finite provinces of meaningand relevance. I shall show that, in attending to the experience ofillness, the physician and patient do so from within the contextof different "worlds", each "world" providing its own horizon ofmeaning.1 Consequently, there exists a decisive gap between thepatient's experience of illness and the way in which physiciansthink about it in terms of disease. The nature of this gap must berecognized by the practicing physician if he is to constitute ashared world of meaning with his patient and thereby assist himin dealing with the existential predicament of his illness.

It should perhaps be noted that phenomenological approachesto the problem of illness are not altogether new.2 All suchanalyses emphasize that illness is intelligible as a lived experience— an experience that can be rigorously examined and elucidated.What I take to be revealing about the phenomenological analysisin this particular essay is that it directly focuses on and clarifiesthe different perspectives of physician and patient that are oftenin conflict. While there may be a wide superficial recognitionthat physicians' conceptualizations differ from their patients'experience of illness, this is often assumed to be simply a matterof different levels of knowledge (with the physician's conceptuali-zation being regarded as the more accurate representation of the"reality" of illness). The following analysis of the constitution ofmeaning in the patient-physician relationship suggests that thisdifference in understanding is much more profound than gener-ally recognized.

In the second part of this essay, I shall suggest that a pheno-menological description of illness-as-lived reveals certain unvary-ing eidetic characteristics that pertain to the experience of illnessitself regardless of its differing manifestations in particular diseasestates. Such an eidetic description may provide the physicianwith an expanded paradigm of illness and enable him to narrowthe gap between his own "world" and that of his patient. This



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The Meaning of Illness 2 21

paradigm is not limited to the purely scientific anatomical/pathological model of disease but incorporates an understandingof illness-as-lived.

I. THE PHENOMENOLOGICAL APPROACH

In his descriptive investigation of phenomena, Edmund Husserlpaid particular attention to the manner in which the individualexperiences the world. He analyzed such experiencing in termsof the structuring activity of consciousness, and thereby disclosedan essential correlation between the perceiver and the objectperceived (between myself-as-believer and the belief-as-believed-by-me). Husserl demonstrated that, in actively interpreting the"reality" encountered, the individual effectively transposes "the"world into the "world-for-me". Thus, the world of immediateexperiencing is necessarily unique.

In emphasizing the direct exploration of experienced pheno-mena, Husserl was concerned that we critically evaluate all ourpresuppositions about the world. He noted that we do notconsciously reflect upon the manner in which we experience"reality". We simply take the "objectivity" of the familiar worldfor granted, rarely recognizing it to be a world always constitutedby the activity of individual consciousness. Husserl called for asuspension of this natural attitude of taken-for-granted believing-in the world — a process he referred to as the phenomenological"reduction" or "bracketing". In performing the phenomenologicalreduction, the individual makes explicit the activity of experienc-ing itself. His concern is no longer with the object-as-such, butrather with the object-as-it-is-perceived or as-it-is-experienced.

The phenomenological approach provides a method of explor-ing the nature of meaning in the context of the physician-patientrelationship. Such an approach requires that one focus uponillness, not as an "objective" entity in and of itself, but ratherupon illness as it is experienced by both the patient and thephysician.3 I shall argue that such a shift in focus reveals thatthere is a systematic distortion of meaning in the physician-patient relationship. As Richard Baron (1985, p. 609) has noted,"a great gulf now exists between the way we think about diseaseas physicians and the way we experience it as patients." Pheno-menology allows us rigorously to examine the nature of this gulfbetween physician and patient, to make explicit the assumptions



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that result in the distortion of meaning, and to provide a detaileddescription of illness-as-lived.

II. FOCUSING

Husserl noted that the manner in which an object is experiencedis strictly correlative to the way in which an individual explicitlyattends to, or focuses on, that object. In Husserl's terms (1970, p.108) the activity of consciousness renders the object "thematic".It is through such attentional focusing that certain aspects of theobject are rendered explicit. One may, for example, focus on thecolor rather than the taste of a glass of wine. One may choose toattend to Ronald Reagan as President of the United States, or ashusband of Nancy. The attentional focus that renders the objectthematic varies. Additionally, one may thematize in a varietyof modes — cognitively, valuationally, emotively, and so forth(Zaner, 1970, p. 165). The meaning of the object-as-experiencedwill change as the attentional focus varies.

In his phenomenological analysis of the social world, AlfredSchutz (1962a, p. 9; 1962b, p. 227) observes that ultimately justwhat the individual attends to depends upon his biographicalsituation and upon the complicated texture of choices, decisionsand projects that make up his life plan. Experience is encoun-tered, attended to, and rendered thematic in terms of the indi-vidual's unique situation; that is, in light of his own "specialinterests, motives, desires, aspirations, religious and ideologicalcommitments" (Natanson, 1962, p. xxviii). "The" world is validaccording to the way it is defined in "specifically personal acts ofperception, of remembering, of thinking, of valuing, of makingplans . . ." (Husserl, 1970, p. 317).

Such attentional focusing determines the meaning of illness.The patient and physician are motivated to attend to differentaspects of the experience, and each thereby renders it thematicin a qualitatively distinct manner. The physician is trained to seeillness essentially as a collection of physical signs and symptomswhich define a particular disease state. He thematizes the illnessas being a particular case of "multiple sclerosis", "diabetes", "pep-tic ulcer", and so forth. The patient, however, focuses on adifferent "reality". He does not "see" his illness primarily as adisease process. Rather, he experiences it essentially in terms ofits effects upon his everyday life. Thus, whereas the physician



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sees the patient's illness as a typical example of disease, thepatient attends to the illness for its own sake. This is an explic-itly different focus. Whenever one considers something as anexample, it is not considered for its own sake, but only insofar asit exemplifies something other than the affair itself.

III. HABITS OF MIND

The motivation for focusing is intimately related to the individ-ual's placement within the familiar world. In the practice of aprofession certain "habits of mind" develop that provide a hori-zon of meaning by means of which reality is interpreted. Such"habits of mind" are in many ways peculiar to the profession thatutilizes them. They represent a distinct approach to the worldand compose the culture of a profession (Kestenbaum, 1982, pp.6-7).

"Habits of mind" in a real way determine the manner in whichan object is rendered thematic. For example, the professional artcritic and the ordinary man-in-the-street will look at a paintingdifferently. The art critic will be influenced by certain "habits ofmind" that are a function of his profession. He may be preoc-cupied with the technique of the artist, the explicit use of color,and so forth. These "habits of mind" will, to a large extent,determine what he will "see" and the way in which the sense ofthe object is made explicit. His experiencing will, therefore, bequite different from that of the untrained individual. Indeed, itmay be difficult for them to converse together about the samepainting in anything other than a very superficial manner.

The scientific "habit of mind" likewise determines the mannerin which an object is rendered thematic. It provides a horizon ofmeaning, a motivation for focusing, and a means of constituting"reality". However, the scientific interpretation is quite distinctfrom other interpretations of "reality". In particular, it is quitedifferent from the immediate experiencing of that "reality" in theeveryday world.

Maurice Natanson (1968, p. 95) argues that the world ofimmediate experience has a certain precedence over the deriva-tive world of science. We first of all experience the world in itsimmediacy. Only in reflection and abstraction may we thenthematize our experience in terms of theoretical, scientific con-structs.4 Even then, as Natanson notes, there is a "decisive gap"



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between one's immediate experiencing of the world and thetheoretical, scientific account of the causal structure of suchexperiencing:

A study of Helmholtz's Physiological Optics tells me nothing about the visualexperience I have in its qualitative immediacy . . . my color world is first of allmine; it is not mediated by expert knowledge of its conditions, nor is thetheory of vision in any way relevant to its presentational validity. It is only ina derivative sense that the case of my color experience falls under the generalscientific category of visual perception. In one sense, then, my color world is aprivileged one: the total scope and content given in it possess an experientialdepth that is independent of subsequent theoretical explanation (Natanson,1968, p. 95).

Natanson points out that what holds for vision holds for theentire world of immediate experience.

This "decisive gap" between the world of immediate experi-ence and the world of science manifests itself concretely in theexperience of illness. The patient encounters his illness in itsqualitative immediacy. The categories that he uses to define hisillness are concerned with everyday life and functioning. Thephysician, on the other hand, may categorize the patient's illnesssolely in terms of scientific constructs; that is, according to theprevailing "habits of mind" of the medical profession that renderthe illness thematic in terms of "objective", quantifiable data.Indeed, it is often assumed by the physician that such clinicaldata exclusively represent the "reality" of the patient's illness. AsEric Cassell notes, on being presented with a sick person doctorsdo not attempt to find out what is the matter but, rather,attempt to make a diagnosis. This is not the same thing. AsCassell points out "diagnoses are relatively sharply defined namediseases that are believed to exist when certain criteria are metby the patient's history, physical examination, or laboratory orother tests" (1983). In the event that such objective criteria arenot met, from the physician's point of view there is no illness.But the patient nevertheless still feels ill (Cassell, 1983).

It is worth noting that when physicians themselves becomepatients they immediately become aware of the "decisive gap"between the qualitative immediacy of their own experience ofillness and any subsequent scientific explanation in terms ofdisease (Sacks, 1984). Physicians who speak of their experienceas patients note this change in experiencing and say they have



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great difficulty discussing their illness with colleagues (Rabin,1982; Lear, 1980; Stetten, 1981). What they fail to recognize isthe difference in thematizing. Their colleagues are thematizingthe illness according to the "habits of mind" of the profession,whereas they, as patients, are responding to the illness-as-lived.

IV. FINITE PROVINCES OF MEANING

Schutz has suggested that in structuring experience the individ-ual organizes his world in terms of "sub-universes of reality" or"finite provinces of meaning" (1962b, pp. 226—259). He definesa "finite province of meaning" as a certain set of experiences, allof which show a specific cognitive style (Schutz, 1962, p. 230).These finite provinces of meaning represent different worldsconsistent within themselves but distinct from each other. Suchworlds include the world of dreams, the world of religious exper-ience, the world of scientific contemplation, and so forth (Schutz,1962b, p. 232). In identifying these finite provinces of meaning,Schutz (1962b, p. 230) is concerned to show that it is themeaning of our experiences rather than the ontological structureof the objects that constitutes "reality".

The universe of science represents a finite province of meaningthat is quite distinct from the naively experienced, immediatelyperceived reality of everyday life. Whereas the physician definesillness in terms of those categories that are relevant in the uni-verse of science, the patient uses categories that are related toeveryday life and function. Illness as it is lived-through is re-sponded to quite apart from any scientific theoretical explanationof disease.

V. RELEVANCE

Schutz has emphasized that what the individual attends todepends upon the project in which he is engaged and the systemof relevances that are a function of his life plan. While engagingin the scientific project, the scientist detaches himself from hisbiographical situation. Consequently, his system of relevanceschanges. What is relevant in his scientific work may be quiteirrelevant in his daily life, and vice versa (Schutz, 1962a, p. 37).By stating the "problem at hand" the scientist defines what is



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considered relevant and guides the process of inquiry (Schutz,1962b, p. 249).

In attending to the experience of illness the physician does soin light of the "disinterested attitude" of the scientist. At thislevel he focuses upon the disease process itself. Consequently,the clinical data are of highest relevance to him. However, thepatient is less concerned with the clinical data. What is mostrelevant to him is the effect the illness will have upon his life.

Tolstoy has captured this shift in orientation in The Death ofIvanllych:

To Ivan Ilych only one question was important: Was his case serious or not?But the doctor ignored that inappropriate question. From his point of view itwas not the one under consideration, the real question was to decide betweena floating kidney, chronic catarrh, or appendicitis. . . . All the way home(Ilych) was going over what the doctor had said, trying to translate thosecomplicated, obscure, scientific phrases into plain language and find in theman answer to the question: "Is my condition bad? Is it very bad? Or is there asyet nothing wrong?" (Tolstoy, 1978, pp. 520—521).

Walker Percy has elaborated on this distinction by suggestingthat one may differentiate between "knowledge sub specie aeter-nitatis" [knowledge that can be arrived at anywhere by anyone atany time, e.g., the boiling point of water] and "news" that ex-presses a "contingent and nonrecurring event or state of affairswhich . . . is peculiarly relevant to the concrete predicament ofthe hearer of the news" (Percy, 1954, pp. 125—126). The signi-ficance of a statement for an individual will depend upon hissituation. "To say this", says Percy, "is to say nothing about thetruth of sentences. Assuming that they are all true, they will havea qualitatively different significance for the reader according tohis own placement in the world" (Percy, 1954, p. 128). Forexample, the castaway on a desert island and the individual inthe midst of civilization will react differently to the statement"there is water over the next hill". While the statement may be ofmomentous import to the one, it may be of little interest to theother.

The scientist has abstracted from his own existential situationin order to achieve objectivity. What is significant to him as apiece of "knowledge" may be significant to another as a piece of"news"; that is, the information may have a peculiar relevancefor the other's concrete predicament in the world. Such is the



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case in the patient-physician encounter. The clinical data repre-sent "news" to the patient and "knowledge" to the physician.Each, therefore, reacts to the information in a distinctly differentmanner.

In this regard Cassell (1979, p. 203) notes that the patient isboth experiencer and "assigner of understandings". The meaningof illness to a particular patient will depend upon "the collec-tivity of his meanings" — a collectivity that is necessarily afunction of his autobiographical situation (Cassell, 1979, p. 203).Thus, an experience of pain might be interpreted by one patientas a possible heart attack and by another as merely indigestion.The significance of the pain to the particular patient will dependupon his life history and the personal meanings constituted with-in that life history. Likewise the significance of the clinical datato the particular patient will depend upon his unique biographi-cal situation. A clinical diagnosis may be regarded as "terrible" byone patient, and as merely "inconvenient" by another. Each reactsto the "news" of the diagnosis according to its peculiar relevanceto his concrete situation within the world. As Cassell (1979, pp.204—205) points out, the physician is also an "assigner of under-standings" in that he takes the patient's subjective report ofillness and reinterprets it in terms of his own understanding ofdisease processes. This assignment of meaning on the part of thephysician will be quite different from the patient's assignment ofmeaning.

The physician defines the "problem at hand" in light of certaingoals of medicine: diagnosis, treatment and prognosis. Thesegoals appear to be shared with the patient. However, as Baron(1985, p. 609) notes, the patient defines the "problem at hand"in terms of different goals. What the patient seeks is explanation,cure and prediction. This is not the same thing. The patient'sgoals relate to the qualitative immediacy of his illness. Theyrepresent an attempt to integrate the experience into his dailylife. In seeking explanation, the patient seeks a validation of hisexperience, a means to reasonably account for his feeling thatsomething is wrong ("You have a pain because you have gall-stones.") If no explanation is forthcoming ("Your tests are nega-tive. I can't find anything wrong with you"), the patient is at aloss as to how to make sense of his illness. In seeking a cure, thepatient anticipates a perfect restoration of health, a return to theway things were before he became ill. In asking for a prognosis,



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the patient expects a prediction of what is going to happen tohim personally.

Baron suggests, however, that the physician's goals of diagnosis,treatment, and prognosis usually represent "derivative or secon-dary goals":

Diagnosis for us is categorization (for example, acute promyelocytic leukemiaor acute myelomonocytic leukemia), not explanation. Treatment virtuallynever results in cure, if only because treatment itself usually has an effect onpeople's lives, altering "the way things were before." Prognosis is alwaysstatistical and in that sense rarely tells a particular person what will happen tohim or her (Baron, 1985, p. 609).

Since the "problem at hand" is defined differently by patient andphysician, according to goals that relate to their separate worlds,they do not share a system of relevances with respect to thesegoals. What is relevant to one is irrelevant to the other.

In summary, then, it is noted that the physician and patientencounter the experience of illness from within the context ofdifferent worlds. Each renders the experience thematic accord-ingly. Although illness is presumed to be a shared "reality"between them, it actually represents two quite distinct "realities".In particular, it is noted that the attentional focusing of thephysician is largely determined by the "habits of mind" of hisprofession. The scientific "habit of mind" provides a horizon ofmeaning and a means of structuring "reality". Within the contextof the universe of science, illness is rendered thematic in terms of"objective", quantifiable data. Disease is thus reified as a distinctentity residing in, but in some way separated from, the one whois ill. The patient, however, encounters illness in its immediacyin the context of the world of everyday life, as opposed to theuniverse of science. Thus, he renders the experience thematicaccording to different "habits of mind". Since the patient andphysician define the "problem at hand" in light of different goals,they do not share a system of relevances.

VI. THE EIDETIC APPROACH

The lived experience of illness is a complex phenomenon thatexhibits a typical way of being. A phenomenological descriptionof illness-as-lived reveals certain essential features that charac-terize this way of being and that pertain to the phenomenon



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of illness, per se, regardless of its manifestation in terms of aparticular disease state. These essential features are what I shallcall the "eidetic" characteristics of illness. As Schutz (1962c, p.114) notes, "eidetic" characteristics are those that are essential tothe thing-itself and that remain unchanged regardless of anyvarying empirical features. So, for example, the eidetic character-istics of a cube would include rectangularity, limitation to sixsquares, and corporeality. No cube could be thought of that didnot have these essential characteristics and such characteristicswould remain unchanged through all possible variations of thecube — variations such as color, size and so forth (Schutz, 1962c,p. 114).5

The eidetic characteristics of illness transcend the peculiaritiesand particularities of different disease states and constitute themeaning of illness-as-lived. They represent the experience ofillness in its qualitative immediacy. Just as the physician istrained to recognize certain unvarying characteristics that defineparticular disease states, so he can learn explicitly to recognizethe eidetic characteristics of illness. Indeed, he must do so if heis to bridge the "decisive gap" between the patient's world — theworld of immediate experience — and the world of science.

The eidetic approach makes possible a shared world of mean-ing between physician and patient. Such an approach requiresthat the physician temporarily set aside his interpretation ofillness in terms of theoretical disease constructs, in order to focusupon and make explicit those characteristics that are funda-mental to the experience of illness itself. Such characteristicsinclude the perception of loss of wholeness, loss of certainty, lossof control, loss of freedom to act, and loss of the familiar world.

Illness is primarily experienced as a fundamental loss of whole-ness, a loss of wholeness that manifests itself in several forms.Fundamentally, of course, it is the perception of bodily impair-ment — a perception that is not so much a simple recognition ofspecific impairment (e.g., shortness of breath) as it is a profoundsense of the loss of total bodily integrity. The body can no longerbe taken for granted or ignored. It has seemingly assumed anopposing will of its own, beyond the control of the self. Ratherthan functioning effectively at the bidding of the self, the body-in-pain or the body-malfunctioning thwarts plans, impedeschoices, renders actions impossible. Illness disrupts the funda-mental unity between the body and self.



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Disease can so alter the relation (with one's body) that the body is no longerseen as a friend but, rather, as an untrustworthy enemy. This is intensified ifthe illness comes on without warning, and as illness persists, the person mayfeel increasingly vulnerable (Cassell, 1982, p. 640).

In illness the body is experienced as at once intimately minebut also other-than-me, in that there is a sense in which I am atits disposal or mercy. As Zaner notes, my body has its own"nature, functions, structures, and biological conditions . . . I amexposed to whatever can influence, threaten, inhibit, alter, orbenefit my biological organism" (Zaner, 1981, p. 52). At timesmy body fails me, refuses to yield to my commands. "Because offatigue, hunger, thirst, disease, injury, pain, or even itches, I amforced at times to tend and attend to it, regardless of what maywell seem more urgent at the moment" (Zaner, 1981, p. 52).This sense of "otherness" of body is acutely felt by the patient inhis discussions with the physician. The biological, pathologicalsense of the body is of the body as other-than-me, of the body inopposition to the self, and it is this sense that is now empha-sized.

Even if the body is eventually restored to health, the perceivedloss of bodily integrity remains. For the individual who hasexperienced illness recognizes he has only a limited control overthe functioning of his body; that at some future date it may againcome into opposition with the self. He can no longer take thebody's compliance for granted.

In this regard it is important to note that illness is experiencednot only as a threat to the body but also as a threat to the self.Often when physical impairment or disfigurement is involved,or when role is severely disrupted, the patient loses not onlybodily integrity but also integrity of self. He perceives himself tobe no longer a "whole person". He thinks himself "less of aperson". The disintegration of self is particularly acute in theexperience of incurable illness. It is important for the physicianto recognize the primacy of this loss of self. The patient needssupport in his efforts to establish the integrity of a newly definedself.

The loss of wholeness experienced in illness not only incor-porates a perception of bodily impairment and loss of integritybut also includes the loss of certainty in its most profound form.In the experience of illness the individual is forced to surrender



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his most cherished assumption, that of his personal indestructi-bility. And if this most deeply held assumption is no more than anillusion, what else in his hitherto taken-for-granted existence canremain inviolable? The person who is ill comes face-to-face withhis own inherent vulnerability. "It could happen to ME" is felt inthe experience of illness as a concrete actuality, and not as anamorphous possibility. Once shattered, the illusion of personalindestructibility can be only tenuously re-established.

The radical loss of certainty that accompanies illness is causefor great personal anxiety and fear. Although acutely conscious ofhis fear, the ill person nevertheless finds it difficult to communi-cate his deep apprehension to others. Paradoxically, he oftendeems such apprehension to be inappropriate even though it isineluctably part of his experience. In attempting to minimize theanxiety of the patient, the physician may make an effort todiscuss the illness or therapeutic intervention in such a way asto imply that there is no real cause for concern. The patient,however, may interpret this simply to mean that the profoundanxiety he feels is therefore irrational and inadmissible.

For the most part illness is experienced as a capricious inter-ruption, an unexpected happening, in an otherwise more or lesscarefully formulated life-plan. The disease is perceived as "befall-ing the person, as an unasked-for and unanticipated 'happening-to-me', falling outside the person's range of possible choice andplans" (Zaner, 1982, p. 50). And thus, accompanying the pro-found sense of loss of wholeness and loss of certainty, is an acuteawareness of loss of control. The familiar world, including theself, is suddenly perceived as inherently unpredictable and un-controllable. Illness, as Edmund Pellegrino has noted, "moves us. . . toward the absorption of man by circumstance" (Pellegrino,1982, p. 159).

The capriciousness of illness and the loss of control is acutelyfelt by modern man in light of the illusions he harbors about thepower of technology and the capabilities of modern science.Since technology and science have been extremely successful ineradicating or ameliorating many diseases, not only is illnessperceived as an unwarranted intrusion but the person who is illexpects medical intervention to provide him with nothing lessthan a complete restoration of health. The patient thus comes tothe physician with the unrealistic expectation that such acomplete restoration of health will be forthcoming. If the phy-



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sician is unable to fulfill this expectation, the patient is over-whelmed by his apparent helplessness and perceives his situationto be totally and irrevocably out of control.

The technology that promises redemption concurrently inten-sifies the loss of control experienced in illness. The patient feelshimself at the mercy of faceless machines, whose function hebarely understands, yet whose dictates he must obey. He per-ceives himself to be an object of investigation, rather than asuffering subject. He is acutely aware of the disparity between hisexperiencing as a subject and his being experienced as an object.In his transformation to objecthood, he feels himself no longerable effectively to control what happens to him.

The loss of control also manifests itself concretely in theexperience of having to rely on others to do what one hasformerly been able to do for oneself. Illness, in its various forms,always impedes the ability to be self-reliant, to act on one's ownbehalf. The ill person must not only seek the help of others forphysical assistance but he must also rely upon the help of atrained healer, a physician. This relationship is an inherentlyunequal relationship in that the physician "professes to possessprecisely what the patient lacks: the knowledge and power toheal" (Pellegrino, 1982, p. 159). The inequality of the relationshipaccentuates the loss of control felt by the ill person.

Illness also erodes the capacity to make rational choices re-garding one's personal situation because the one who is ill:

. . . does not understand what is wrong, how it can be cured, if at all, whatthe future holds, or whether the one who professes to heal can in fact do so.The ill person has not the knowledge or skills requisite for curing his ownbodily or mental illness or to gain relief from his pain or anxiety. His freedomto act as a person is severely compromised (Pellegrino, 1982, p. 1 59).

Clinical decisions must ultimately be made by the patient, ifhe is able. Although such decisions are usually made after appro-priate advice and consultation with the physician, the patientalways feels inadequate to the task. The decision is uniquely his,not only in that he must make it but in that it will ultimatelyaffect his plan of life. The responsibility is his, yet he feels that hedoes not possess the knowledge or the capacity to make thedecision in a rational manner. Sometimes he may intuitively feelthat the course of action recommended by his physician is not inhis best interests and yet — more often than not — the patient



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does not feel free to reject the advice of the physician. To do sowould seem to be irrational in the face of the inadequate knowl-edge he feels himself to possess. To do so would also be to riskalienating himself from the one who promises to alleviate hisdistress.

In reflecting upon what is in his own best interest theindividual does so in light of his life plan and his unique systemof values. Each person lives his life according to certain funda-mental principles that have meaning for him personally, and it isin light of these principles that he makes his choices and acts inthe world of everyday life. In the existential crisis of illness, thesefundamental personal values are often made explicit. The indi-vidual encounters and interprets the threat to the self by refer-ence to, and in light of, the principles which render his lifemeaningful.

Invariably the patient assumes (often incorrectly and certainlyunreasonably) that the physician knows and understands whathis personal value system is and, further, that in making theclinical decision the physician is doing so not only in light of theclinical data but additionally with regard to this personal valuesystem. He, therefore, rarely explicitly communicates his valuesto his physician. The physician, on the other hand, may deem itinappropriate, irrelevant, or intrusive to inquire of the patientwhat his value system is and he may judge the clinical data aloneto be sufficient to determine what is in the patient's best inter-est. Thus, the patient not only loses the freedom to make arational choice regarding his personal situation but additionallyloses or abrogates the freedom to make the choice in light of hisuniquely personal system of values.

Illness is a state of disharmony, disequilibrium, dis-ability, anddis-ease in which the individual finds himself separated from hisfamiliar everyday world. It is, as Pellegrino (1982, p. 160) hasnoted, an altered state of existence, a distinct mode of being-in-the-world. The person who is ill is preoccupied with the de-mands and dictates of his altered mode of existence. He isisolated from the familiar world in that he is no longer ableroutinely to carry on his normal activities, to participate in theeveryday world of work and play. His isolation is all the moreacute because the familiar world revolves around him. His asso-ciates continue to pursue their activities much as they have inthe past, and although his illness affects the totality of his



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experiencing, it is a "fact" that is necessarily only in the peripheryof the experience of others.

This point is powerfully illustrated in The Death of Ivan Ilych.Ilych arrived home from the doctor's office and:

. . . began to tell his wife about it. She listened, but in the middle of hisaccount his daughter came in with her hat on, ready to go out with hermother. She sat down reluctantly to listen to his tedious story, but could notstand it long, and her mother too did not hear him to the end . . . There wasno deceiving himself something terrible, new, and more important thananything before in his life, was taking place within him of which he alone wasaware. Those about him did not understand or would not understand it, butthought everything in the world was going on as usual. That tormented IvanIlych more than anything (Tolstoy, 1978, pp. 521, 524)

Illness not only causes a disruption in present functioning butalso effects a change in the individual's perception of the future.In health the individual takes for granted that the future will beavailable to him to accomplish those goals that are an integralelement of his life plan. Few people live their lives solely interms of the present. Most act in the present in light of specificgoals that relate to future possibilities. Illness truncates theexperiencing of the individual. It imprisons him within thepresent moment. The future is suddenly disabled, rendered im-potent and inaccessible. This loss of the future serves further toisolate the one who is ill and separate him from his hithertofamiliar world.

In summary, then, the experience of illness is such that thereare certain characteristics that are fundamental to the experienceand that pertain regardless of its idiosyncratic manifestation interms of a particular disease state. Such characteristics includethe perception of loss of wholeness and bodily integrity, loss ofcertainty and concurrent apprehension or fear, loss of control,loss of freedom to act in a variety of ways, and loss of thehitherto familiar world. These eidetic characteristics representthe "reality" of illness-as-lived. They reveal what illness means tothe patient.

The eidetic approach provides the physician with a means toexamine the experience of illness and to expand his traditionalscientific paradigm of disease. A new paradigm will include notonly an understanding of illness in terms of clinically definabledisease states, but also an understanding in terms of the exis-



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tential predicament of the patient. Such a paradigm will enablethe physician to bridge the gulf that exists between himself andhis patient, between the human experience of illness and thescientific explanation of disease.

VII. ADDENDUM

My major purpose in this essay has been to clarify the manner inwhich the meaning of illness is constituted differently by thepatient and the physician, and to suggest an approach thatmakes it possible for the physician to come to some under-standing of the patient's experience of illness. I have been lessconcerned, in this particular context, to explicitly articulate thenormative and pragmatic considerations that seem to mandatesuch an approach. However, lest it be assumed that there are nocompelling reasons for adopting an expanded paradigm of illness,I offer a few brief observations.

In recent years medicine has been criticized for de-empha-sizing the patient as person. While advancements in medicaltechnology have resulted in significant gains with regard to thetreatment of disease, patients feel increasingly alienated fromtheir physicians (Schwartz and Wiggins, 1985, p. 331). Mucheffort has been made to make medicine (and particularly medicaleducation) "more humanistic". Such an enterprise can only trulysucceed if the anatomical/pathological model of illness (thebiomedical model) is superseded by a paradigm which incorpo-rates an understanding of illness-as-lived. The traditional biomed-ical model focuses on the disease process. Illness is conceptu-alized as an objective, abstract entity, in some way separatedfrom the one who is ill; an expanded model will focus notsimply on the illness itself but on the illness-as-it-is-experiencedby this particular patient. In such an expanded model, theprimacy of the person is rendered explicit.

While there is no doubt that the biomedical model has beensuccessful in many ways, in other ways it has been singularlyunsuccessful. In fact, as Schwartz and others have pointed out,few practicing physicians find this model satisfactory in caring forpatients (Schwartz and Wiggins, 1985, pp. 331—334; Baron,1985, pp. 606-611; Cassell, 1985, pp. 20-23). The biomedicalmodel does not permit the practicing physician adequately todeal with the concerns of his patients, especially perhaps those



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patients who are suffering from chronic and incurable diseases.Yet such patients are in the majority. Nor does this model givean account of illness for which no objective pathology can bedemonstrated.

Case studies demonstrate that physicians who explicitly focuson the patient's experience of illness find they are better able tocare for their patients. For instance, Leigh and Reiser (1980, pp.243 ff). show how the understanding of a patient's subjectiveexperiencing allowed his physicians to treat him more effectivelyin the intensive care unit. Cassell (1985, pp. 157 ff.) discusses apatient with intractable pain in the throat whose father died ofcancer of the esophagus. Understanding the meaning of the painto the patient, enabled Cassell to alleviate the physical symptomsof the patient's illness. In his clinical case histories, Sacks (1985)demonstrates that the "human vision" of the physician (as op-posed to his "medical vision") can provide invaluable insights.intothe patient's particular situation. As Sacks notes such insightsmay suggest therapeutic approaches to the patient's illness whichare not readily apparent from a review of the clinical data alone.The physician's "medical vision" is directed at the clinical picture;his "human vision" is focused on the person who is ill. What thephenomenological approach is concerned to show, however, isnot simply that the patient's experience should be taken intoaccount as a subjective accounting of an abstract "objective"reality, but that the patient's experiencing must be taken intoaccount because such lived experience represents the reality ofthe patient's illness.

NOTES

I should like to thank Richard J. Baron, M.D., for sharing his insight intothe world of medicine and for providing ideas and encouragement throughoutthe preparation of this manuscript. I am also grateful to the following indi-viduals for their helpful comments: Eric J. Cassell, M.D., Steven Crowell,Ph.D., Edmund D. Pellegrino, M.D., and James Sellers, Ph.D.1 In this particular analysis I have focused on the concepts of EdmundHusserl and Alfred Schutz since I find these to be especially helpful inelucidating the constitution of meaning within the separate worlds of phy-sician and patient. It should perhaps be noted in passing that, while Husserland Schutz both provide an analysis of the eidetic structure of experiencing,they differ in some important respects. Schutz's main concern is to analyze



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the meaningful structure of the intersubjective world of daily life (i.e. aphenomenology of the "natural attitude"), and he finds Husserl's analysis oftranscendental intersubjectivity problematic. I am not concerned to explorethese differences in this essay, since I do not believe that they bear on itscentral claims. The emphasis on Husserl and Schutz is also not intended toimply that other phenomenologists may not provide additional insights intothe experience of illness. In another paper I have suggested that the works ofMerleau-Ponty, Sartre and Zaner can be particularly helpful in understandingillness as a disruption of lived-body (as opposed to simply a dysfunction ofbiological body). Furthermore, Heidegger (1962) provides additional insightsinto the disordered existence of illness (particularly with regard to the notionthat illness is a disruption of "world" or "being-in-the-world"). Indeed, J. H.Van den Berg explicitly takes this Heideggerian approach in his works, ADifferent Existence (1972) and The Phenomenological Approach to Psychiatry(1955). Furthermore, Heidegger's analysis of the breakdown of the tool (1962,pp. 102—107) may provide a clue as to the manner in which the "instru-mentality" of the body announces itself in the breakdown of illness.2 See particularly The Humanity of the III: Phenomenological Perspectives(Kestenbaum (ed.), 1982). The essays contained in this work take an explicitlyphenomenological approach to the problem of illness. In addition the intro-duction contains a brief overview of some ways in which phenomenology hasentered health care literature.3 Edmund Husserl (1970, p. 317) has noted that one may distinguishbetween the thematic attitude directed at the "objective" world as scientifictheme (the "scientific attitude") and the "personal attitude". The "personalattitude" focuses not on an abstract "objective" "reality" but rather on the wayin which the individual encounters and interprets "reality". In the "personalattitude" attention is directed to the meaning that an individual's experiencehas for him personally.4 Michael Schwartz and Osborne Wiggins (1985, pp. 331—361) argue thatindeed all scientific experience necessarily presupposes pre-scientific experi-ence. As an example they note that biologists who study the function of thecones of the eye in vision can develop their scientific explanations onlybecause they already know in a pre-scientific fashion what the function of theeye is and what role it plays in perception. Schwartz and Wiggins note thedistinction between everyday, immediate experience and the processes ofabstraction which constitute scientific thought. Following Husserl (1970) theyargue the lifeworld is, in fact, "the foundation of meaning" for science (as it isfor all of human existence) but that this basis of meaning has been forgottenbecause of the "pervasive spirit of abstraction" which dominates science.5 It is not my purpose in this context to critically evaluate Husserl's methodof apprehending essences, i.e., the method of free phantasy variation. Rather Iam simply concerned to emphasize the distinction between the eideticfeatures of an object and its varying empirical features. However, it should be



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noted that free phantasy variation differs from empirical generalization in that,in the former, one explicitly endeavors to consider a range of actual andpossible affairs as examples of some kind or sort in order to determinewhether and which characteristics intrinsic to the range of variations areinvariant. As Zaner notes, "it is never a matter of trying to generalize . . . it israther a question of trying to determine what is invariantly common to(exemplified by) every actual and possible example of the kind in question"(Zaner, 1981, p. 194). For a helpful discussion on free phantasy variation, see'The art of free phantasy in rigorous phenomenological science' (Zaner,1973a), 'Examples and possibles: A criticism of Husserl's theory of free-phantasy variation' (Zaner, 1973b), and A Study of Husserl's Formal andTranscendental Logic (Bachelard, 1968, pp. 173—197). For a justification ofthe method of free variation, as opposed to the method of empirical gener-alization, see Idea and Experience: Edmund Husserl's Project of Phenomenology inIdeas I (Kohak, 1978, pp. 15 ff.), and The Context of Self (Zaner, 1981, pp.242—249). What is particularly important to the case of illness, is to recog-nize that lived experiences exhibit an eidetic structure (an essential way ofbeing) and that one cannot fully understand the "fact" of a particular livedexperience without grasping the eidetic structure embodied in the particularinstance. For example, the primary experience of fear is a way of being (beingafraid) and to fully understand what a particular instance of fear means is tograsp not only the contingent "fact" of an individual's fearing but also theeidetic characteristics of being-afraid. Thus, to consider illness in terms of itsconcrete instantiation apart from its eidetic structure is to miss what isessential to the meaning of the lived experience of illness. The attempt tograsp the eidetic structure, difficult as it may be, is what distinguishes aphilosophy of illness from a psychology. Moreover, Husserl would suggestthat adequate psychological strategies presuppose clarity at the philosophicallevel. While the example of illness is obviously more complex than theexample of the cube, since (in Husserl's terms) it involves various foundedlevels of meaning, nevertheless it is possible to uncover an eidetic structurewhich holds through all variations of its instances. With regard to suchfoundational complexity I would, following Schutz, argue that it is possible tocarry out a descriptive phenomenology of the "natural attitude" withoutcarrying everything back to the transcendental level.

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