For publication in
    
    Assaults on the Lifeworld: New Directions in the Sociology of Chronic and Disabling Conditions Graham Scambler and Sasha Scambler, Editors (London: Routledge)
    
    RETHEORIZING THE CLINICAL ENCOUNTER: NORMALIZATION PROCESSES AND THE CORPORATE ECOLOGIES OF CARE
    
    Carl May
    
    Institute of Health and Society The Medical School University of Newcastle upon Tyne 21 Claremont Place Newcastle upon Tyne NE2 4AA United Kingdom Tel: + 44 (0)191 222 5591 Fax + 44 (0)191 222 6043 c.r.may@ncl.ac.uk
    
    INTRODUCTION The clinical encounter fascinates sociologists because it is a tremendously rich source of empirical knowledge about the conduct and character of contemporary societies. It is a vehicle for both macro-sociological interests about the social distribution of material resources and cultural capital, mapped along the axes of ethnicity, gender, class, age, and religion, and at the same time a locus for micro-sociological investigations of the accomplishments of knowledge and practice, the making of meanings and identities, the relations between persons and technologies, and the narratives by which everyday life is socially constructed. Not only that, but in the clinical encounter chemistry, biology, and psychology appear not as collaborative or competitor disciplines of inquiry, but as embodied and embedded realities that must be pragmatically negotiated by its participants, and interpreted sociologically. Thus, the clinical encounter is easily assigned the status of a technical and moral ‘special’ place where deep existential questions and troubling experiential elements of human life get played out. I cannot hope to capture the range of these encounters, or review their treatment in sociological theory and research in this chapter. But my brief from the editors of this collection was to draw on my own work to ‘retheorize’ the clinical encounter. My approach to this has been to think about some of its meso-level aspects—not so much about what sets it apart, as what makes it like, other episodes of social action—from a starting point that in some ways the clinical encounter is not ‘special’ at all. Like many institutionally framed and organizationally enacted encounters, it is the site of work. It is the work of the clinical encounter that I wish to explore in this chapter. In turn this gives me the opportunity to think through some aspects of Normalization Process Theory (May 2009; May & Finch 2009), a theoretical model that focuses on how material and symbolic practices are organized into the work of everyday life, and so become routinely embedded and integrated in their social contexts. THE ‘SPECIAL CHARACTER’ OF THE CLINICAL ENCOUNTER Medical sociology has long conceptualized the clinical encounter as a site of hierarchical asymmetries of knowledge and practice—in which doctors, nurses, and patients play out complex exchanges within autonomous and private social spaces (Heritage & Maynard 2006; May 2007). The earliest sociological accounts of doctor-patient interaction stressed their status as social systems bounded off from the rest of the world by the space assigned to autonomous professional knowledge and self–regulated institutional forms (Hall 1951; Henderson 1935). This remains a kind of ‘ideal type’ of professional-patient relationship, not simply for medicine but also for other health professions, including nursing and dentistry. My interest in this chapter is to explore the theorisation of the clinical encounter in sociology, but to do so inevitably involves some consideration of the ways that the health professions theorise their social relations. In 1935, as Lawrence J Henderson wrote the first ‘medical sociology’ paper for the New England Journal of Medicine, the British general practitioner, Henry Britten Brackenbury (1935), was
    
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    developing a view of clinical encounters that drew on the emerging discipline of social psychology and which articulated clinical work to privatised social relations and ‘good’ communications. This functional perspective is most rigorously developed in Parson’s analysis of medicine in The Social System (Parsons, 1951) in which professional and patient roles are conceived in terms of privatised and proximal relations, and in which the moral qualities of these roles rest on the capacity of doctors to maintain the direction and boundaries of the clinical encounter itself. Parsons points to the way in which these activities rest on the ‘segregation of the context of clinical practice from other contexts’ (1951: 457). Unlike almost everything else that Parsons wrote, his account of medical practice is derived from fieldwork, undertaken in the private Boston hospital where his brother-in-law (a consultant physician) worked during the 1940s (Parsons 1977). His later writings on medicine and health—especially those on chronicity—were also profoundly influenced by his experiences of medical responses to the depression, panic disorder, and subsequent suicide of his daughter Anne Parsons (Orr 2006). The ideal type clinical encounter specified in the work of Talcott Parsons has enormous resonance with the aspirations of both professionals and patients. Underpinning these aspirations—and perhaps also the interests of sociologists, then and now, that have studied the clinical encounter—is the notion that it is in some way special. This is not so much a question of the ‘black box’ of biomedicine, as much as one of the existential importance of the encounter. It is one where awareness of the fragility of things looms and lingers in the application of medical concepts, the naming of parts, and the materiality of the body. Elsewhere (May 2007), I have outlined the ‘Parsonian Paradigm’ running through contemporary medical sociology, pointing to the ways that this has framed analysis of the ‘relationship’ between doctor and patient as an essentially private one characterised by affective neutrality (Cockerham 2005; Parsons 1951). However, over a period of about 50 years this notion of neutrality has broken down in the face of shifts in professional knowledge and practice that have emphasised the importance of subjectivity and experience of illness and the possibility of therapeutic alliance. In Parsons’ account medical practices are seen to be organisationally and professionally located, but these locations are secondary to the privatised—mainly dyadic—social relations through which they are mobilised and enacted in the clinic. This private dyad has subsequently formed a basic unit of analysis for medical sociology. Elsewhere I have argued that it retains paradigmatic force precisely because of its continuing claim of individualization (May 2007). The Parsonian paradigm has been heavily criticised, especially by sociologists concerned with chronic illness (Gerhardt, 1989), but its continuing effects have been argued to represent under-theorisation from within sociology itself (Scambler & Britten, 2001) and it has continuously sedimented into sociological research and practice. But crucially, it has retained its analytic force because it permits a set of reciprocal relations across boundaries. This, in turn, supports an alliance between the social and clinical sciences (O'Neill 1986; Timmermans & Haas 2008). It is also the case that in the second half of the twentieth century, medical knowledge and practice increasingly sought to include elements of the patient’s subjectivity by individualizing experience and meaning (May et al 2006), while at the same time massive global processes of biomedicalization have reconstructed health care institutions and their organizing impulses (Clarke et al 2003). Indeed, health technologies
    
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    of different kinds have become important actors upon the bodies of the sick, and intermediaries between the sick and those who seek to care for them. The specialness of the encounter between medicine, nursing, the other health professions and sick people is opened up by sociological analyses that take Parsons’ dyadic and private relationship as the starting point. These analyses fly off in different directions. Some sociologists are increasingly influenced by perspectives from Science and Technology Studies (Langstrup 2008). Others—for example Timmermans and Haas (2008)—argue for an even greater integration between the specialness of medicine and the specialness of its study by sociologists, suggesting that medical sociology should reorient itself to the study of objective biomarkers. I am going to take a completely different line in this chapter, by suggesting that there is nothing ‘special’ at all about the clinical encounter. In asserting this I am not, of course, saying that it is not important. The conduct and consequences of these encounters often matter a great deal to their participants, and to those around them. They are sometimes matters of life and death. Often they are the site of complex asymmetries of power and knowledge and negotiations that stem from these (Salmon 2000). But they are also very much like other kinds of social encounters in which complex patterns of knowledge and practice are operationalized and negotiated—often with the assistance of technical algorithms, managerial directives, cost controls, and electronic intermediaries— in which trajectories and circumstances are translated into a management problem for corporate entities, and the consequent harnessing of experiences and subjectivities to divisions of labour and labour processes. Parsons saw the working out of relations between doctor and patient as the ideal type of professional encounters. He set it out as a matter of neutrality and privacy in its conducts and contexts. However, in the conditions of late modernity, the construction of privatized professional space and autonomous professional action is collapsing in the face of systemic corporate intrusions that have reshaped professional-patient relations. These are areas of sociological inquiry that raise important questions about subjective self-identity, narrated meanings, and epistemological communities. But they also raise important questions about action, and it is this problem that I want to focus on in what follows. So, this chapter pursues the implications of the argument advanced in the introduction—that the intrusion of corporate organizing impulses into the clinical encounter assaults its special moral character as the ideal type of professional-patient interaction. FORMING AND FRAMING THE CLINICAL ENCOUNTER Timmermans and Haas (2008) are the latest in a long line of critics of medical sociology who have pointed to the purposive nature of medicine, and its normative focus on doing for the patient. But as Parsons noted, just at the point when his theoretical star was beginning to wane, medicine did not shoulder this burden alone (Parsons 1965), for the patient had become a participant in this process—and participation in sickness and recovery was ‘a job to be done’ to reach ‘achievement capacity’ and ‘overcome dependency’ but in ‘co-operation with those technically qualified to help’ (1965: 286-7). The work of his contemporaries added a temporal element to this, in the concept of the illness career (Glaser & Strauss 1965; Roth 1963; Twaddle 1980), as a set of phases and
    
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    transitions characterised by sequences of decisions and actions and consequent patterns of changing interactional forms, roles, and attributions of status. Of course, the business of co-operating with ‘technically qualified’ health professionals, and the concomitant problem of legitimately occupying the sick role, raised objections. Principal amongst these was that that in some illnesses whether or not the sick person conformed to normative expectations of the sick role was irrelevant. Such diseases included chronic illnesses (the ‘longstanding conditions’ of contemporary health policy), mental health problems, and malignant neoplastic or neurodegenerative diseases. Uta Gerhardt (1989) has charted the emergence of these sociological criticisms of the ‘sick role’ as it was conceived by Parsons. However, it is important to remember that such objections emerged during a period in which the epidemiological landscape underwent massive changes, because profoundly important developments in clinical medicine meant that in the advanced economies many dangerous and acute diseases were displaced by chronic health problems associated with an affluent and ageing population. At the time at which Parsons formulated the ‘sick role,’ co-operation with recovery was at issue, and recovery itself was more often than not in doubt. The epidemiological transition from acute to chronic illness has changed this, and for most of us our encounters with medicine will be about palliating symptoms, managing decline, and delaying death—not saving life. As we have seen, Parsons focused on the ‘special’ character of clinical encounters as the site in which social roles were manifest and the moral qualities of actors were played out. To fully understand the clinical encounter, we need to think of it as Parsons seems to—as a place where a job gets done—and consider the nature of work. Normalization Process Theory can help us think about this because it provides a framework for thinking about how the ‘work’ of doing and being is brought forth in practice—and emphasises the importance of social action in such contexts. If what I have claimed earlier is true, and the privatized relation between professional and patient is now an instance of a set of corporate impulses, we must begin by defining the clinical encounter as distributed and reciprocal rather than singular relations, thus: (i) The clinical encounter consists of socially patterned components of work through which participants are organized into and embedded in a distributed network of organizational and institutional relations. The work of organizing and embedding participants into the clinical encounter is operationalized through generative mechanisms that form relations of coherence; cognitive participation; collective action; reflexive monitoring. The production and reproduction of the clinical encounter requires continuous investments by participants in ensembles of action. These investments are carried forward in time and space, and the products of this work may eventually become routinely integrated in the life-worlds of participants.
    
    (ii)
    
    (iii)
    
    From these propositions, as we shall shortly see, stem a set of theoretical hypotheses about the form and direction of sickness work.
    
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    The corporate and distributed character of the clinical encounter has important implications. The first of these is that when we speak about ‘participants’ in the clinical encounter we are not necessarily referring solely to doctors or patients, but rather to many actors whose work connects with the encounter. Nor should we see the patient as solely the object of work. They do the work too—a point consistently made in sociological studies of the experiences of illness, for example, by Charmaz (2006), Corbin and Strauss (1988), and Cornwell (1984). Patients enact the business of sickness by doing work that establishes themselves and others in illness careers, and just as the business of biomedicalization (Clarke et al 2003) and medicalization (Conrad 2007) form frameworks for patient-hood, so the work of doing patient-hood and being ill reciprocally forms the business of professional action and the everyday negotiation of professional identities. Twaddle’s (1980) observation that ‘no patient comes to the health professional with a disease’ fully formed (1980: 112), ought to have its counterpart in the notion that no doctor comes to the patient with a fully formed body of medical knowledge and practice. Ruth Graham has observed that it has long been a criticism of medical sociology that it treats illness and patient-hood as something that is done to people by a medicine that takes the form of an impersonal, impassive, institutional thing—neglecting the human qualities of individual clinicians and the dilemmas that they face (Graham 2006). Clinicians appear in such accounts as representatives of institutionalized knowledge and practice, often resisting narrated and embodied expressions of identity. We need to remember that doctors and nurses are also working (Melia 1987), and that they are pushing to get through work that is ‘hard’ and ‘heavy.’
    
    EMBEDDING THE WORK OF SICKNESS In the first part of this chapter, I argued that the clinical encounter is temporally and spatially distributed and that it is the site of multiple forms of work, through which sickness is enacted, embedded, and integrated into the life-world. The clinical encounter can thus be considered a field rather than a thing. Rapley has offered a rigorous theoretical and empirical analysis of the problem of the distribution of decision-making work across such fields (Rapley 2008). One way to see the clinical encounter, in this context, is to locate it in a corporate ecology, an organizing terrain in which the coproduction of health and healthcare is at issue, but which includes many social actors— individuals and groups—who contribute individually and collectively to the processes of co-production by their actions (and sometimes inaction). This process of co-production may involve innumerable others and, in the end, may have very little to do with the doctor and patient around whom it is formed. All of this involves a looking at sickness as a job to be done, and to the view that I have outlined earlier that this work is framed and constrained by corporate impulses rather than privatized roles. It shifts attention away from a set of experiences and identities that are attributed to and by sick people, and involves us in looking at the coherence of the symbolic and material resources that are mobilized to form the objects of work; the patterns of cognitive participation and collective action that are implicated in being and doing the work of being sick; and the means of reflexive monitoring by which that work is made sense of and appraised. 6
    
    Coherence The notion of coherence draws into view work that defines and organizes the practices of sickness as embeddable in the life-world. We can draw this out as a formal hypothesis: (H1) Coherence is dependent on work that defines and organizes the elements of sickness as a cognitive and behavioural ensemble.
    
    Coherence means that the work of co-producing sickness—the ensemble of beliefs, behaviours and acts that manipulate or organize its objects—is made possible by a set of ideas about meanings, uses and utility; and by socially defined and organized competencies. These meanings and competencies hold the sickness together, and make it possible to share and enact it. This leads to a second hypothesis that: (H2) Sickness work is shaped by factors that promote or inhibit participants’ apprehension of it as meaningful.
    
    Studies of the differentiation of sicknesses have focused on nosology (Bowker & LeighStar 1999) more than distinctions between bodies of work, but the nature of this differentiation is sometimes in doubt. The complex interweaving of chronic pain, socalled ‘medically unexplained symptoms,’ and depression, that is sometimes a problem for people in pain (May et al 2000) and doctors (May et al 2004) is the focus of different kinds of work that promote or inhibit different frames of meaning. In this context, coproduction requires work that differentiates and specifies personal experiences of the body in pain that belong to both doctor and patient, and the socio-technical categories that that they can place these in. Central to the work of making sickness meaningful are the practices of joining individual experiences—pain, distress, incapacity—to communally specified categories. Membership of these categories permits both of the parties immediately involved (doctor and patient), along with many others, to do the work that goes along with sickness. These practices are more than a set of acts that are externally defined and normatively constrained. They have meanings that are learned, shared, and experienced by actors in specific social contexts, as they work the practice through. These meanings are internalized and contribute to anchoring sickness in the lifeworld. This leads to a further hypothesis: (H3) The coherence of sickness work requires that actors collectively invest in its meaning. Cognitive participation Sickness requires symbolic and real enrolments and engagements of human actors that position them for interactional and material work. From this stems the hypothesis that:
    
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    (H4) Cognitive participation is dependent on work that defines and organizes sickness into networks of actors Work that defines and organizes human engagements with sickness runs through long interaction chains which bind different categories of actors together. Such chains can involve highly focused work for and on the body, or more diffuse patterns of activity— the practices of management and self-management that have become so important in policy around chronic sickness. This leads to the hypothesis that: (H5) Sickness work is shaped by factors that promote or inhibit actors’ participation. Participation in sickness work requires that actors initiate a practice. That is, they possessed powers of invention and agency that lead to their enrolment into social and socio-technical networks. There is now a great deal of work that points to the impacts of biographical disruptions (and consequent socialization processes) experienced by sick people (Bury 1982; Charmaz 2006; Pilgrim & Rogers 1993), as they enter into sickness. There is a parallel literature on the occupational socialization of doctors (Good 1994; Sinclair 1997). These form quite distinct spheres of sociological interest and practice. But an approach that looks at the co-production of sickness work draws them together. In this context, studies of disputed enrolments—for example, of chronic fatigue syndrome (Clarke 2000; Ware 1999)—are sociologically interesting because they are deviant cases. Deviance calls into question legitimacy of an illness identity, and in doing so, the warrantability of enrolling all of its participants is thrown into doubt. Social constructionist approaches that have (rightly) emphasised the contested nature of much medical knowledge and practice are important. But these also serve to distract attention from the more mundane, but still deeply problematic contests over participation that stem from inequalities of understanding and access. In this context, enrolment involves work that brings about and organizes sickness into communities of practice. These may be characterised in many different ways: through attributions of shared identity or difference (Whelan 2007), within patient groups, for example; or through the closely framed interactions that derived from shared knowledge about disease that bring together families and their genetic counsellors (Chapple et al 1996). But for many people doing sickness work, contests over the legitimacy of sickness identities or over the warrantability of symptom expressions are matters for the margins. The work that they face is work of enrolment and activation, bringing forth the cultural and material resources that make sickness work possible, and which engage them in overlapping networks of norms and conventions by which they can, in turn, enact sickness. This leads to a further hypothesis, that: (H6) Cognitive participation requires that actors invest commitment in sickness work.
    
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    Collective action The chains of interactions around which cognitive participation in sickness work is framed and performed are simultaneously the sites of enacting sickness. It is important to emphasise that just as cognitive participation requires that people are organized in to sickness work, so collective action is required to express that participation in a set of relationships and practices. This leads to a hypothesis that: (H7) Collective Action is dependent on work that defines and operationalizes sickness.
    
    If we take the notion that sickness work really is work seriously, then this is the site of its most visible elements. It is about framing identities (mobilizing attributions about selves), measuring and managing the body (the peak flow meter and the urine test; the handkerchief and the syringe driver), and the organizational contexts in which actors are located. Salmon et al’s work on patient controlled analgesia in hospitals (Chumbley et al 1999; Salmon & Manyande 1996), and Ong et al’s on experiences of musculosketal pain in the community (Ong & Hooper 2006), are important British examples of research that draws out the multiple forms of public work that stem from enacting sickness work in clinical encounters. This work is not unproblematic, however, and this takes us to our next hypothesis: (H8) Sickness work is shaped by factors that promote or inhibit actors’ enacting it.
    
    Four sets of factors shape collective action around sickness work. First, problems of interactional workability shape the way that sickness attributions and connected symbolic and material tasks can be mobilized in practice, both to solve problems and secure agreements about the nature of those problems and solutions. This is the doing work of sickness, the point at which the body and mind are worked out. This work may be to manage and measure bodies, to employ objects or artefacts, or to assemble accounts of feelings and sensations, and it may be to reorganize relationships and contexts—with the self (in response to biographical disruption) and with others (in response to the requirements of sick roles)—but however it is formed, this is the visible domain of sickness work. It is not exclusive to patients, doctors, or others. Instead it is distributed across broad (and multiple) networks, and embedded in the application of techniques and technologies. Almost all sickness work is now distributed in part to the patient—only the most seriously ill are completely relieved of their normative responsibilities. Second, relational integration is about the social organization of trust through the social networks in which sickness work is operationalized. Here, asymmetries in knowledge and practice between different categories of actors are important elements of practice, but as Beutow and colleagues (Buetow et al 2009) point out, there is increasing homologization amongst participants in sickness work. Patients have increasing technical knowledge and expertise and vastly improved access to information. In this context, sickness work may include resistance, subversion or reinvention, as well as affirmation, 9
    
    and compliance—on all sides—but it always involves work around confidence and accountability between network members. The redistribution of information—and also the capacity to interpret this knowledge—is one of the key elements of sickness work in late modernity. But there is simply too much information to manage, and so new techniques and technologies for securing confidence in this knowledge need to be embedded in sickness work. New domains of technogovernance are forming in which the affordances of information and communications technologies are played out in the service of rationalizing the relationships between participants in sickness work (May et al 2006), and a regulatory science of codified healthcare information is also emerging in the production of clinical guidelines. These manage spending decisions, constraining the previously autonomous decisions of the private clinical encounter according to corporate norms. If there is too much information to manage in the distributed elements of the clinical encounter, then there may be also be too much work. All but a tiny proportion of the burden of sickness work has always fallen outside the formal boundaries of healthcare systems. In the last decade or so, however, formal healthcare agencies have sought to find ways to shift some of their burden elsewhere. This not just a matter of cost control. It also reflects the increasingly routine nature of much healthcare work (May 2009). This shift demands workers, and so the doing of sickness work is shaped, third, by its skill-set workability. This describes the conduct of work that distributes sickness work across a division of labour and defines elements of its performance. Anne Rogers’ programme of critical research on ‘expert patient’ programmes has shown how shifting the burden of this work to sick people is an important underpinning for policies of empowerment and consumerism that underpin the political programmes of New Labour in the UK (Gately et al 2007; Kendall & Rogers 2007; Rogers et al 2005) the advanced economies. Finally, this work must possess contextual integration. Collective action in this context not only includes the material work of sickness, but also the work of controlling the burdens of sickness—the patterns of self governance and preventative regulation that are a commonplace of Foucauldian analyses of the discipline of health (Petersen & Lupton 1996). These seek to individualize both responsibility and costs. However, socially patterned sickness work needs to be linked to cultural and material resources. To be fully realized, this work must have those resources flowing through it. That sickness work is labour intensive is not in doubt. Expenditure of money and effort is distributed horizontally across networks, and vertically through policy structures. This tends to be seen as a political or policy problem about money (in which the growing costs of healthcare are construed as a burden on the reducing population of young healthy taxpayers), rather than a political or policy problem about labour processes and markets (in which the increasing effort required to manage and do sickness work is a burden on the increasing population of mainly older, less healthy, tax-beneficiaries). Taken together, the operation of the four factors that frame collective action lead us to the hypothesis that: (H9) Collective action requires that actors collectively invest effort in the production and reproduction of sickness work.
    
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    Reflexive Monitoring To this point I have argued that sickness work is defined by practices that organize it as a coherent ensemble of beliefs and actions; that it is formed through practices of cognitive participation; and that it is made manifest in socially patterned collective action. Further, I have argued that sickness work is horizontally distributed across social networks, and distributed vertically in a set of relations between persons and policies. The fourth and final domain of sickness work that I wish to consider here is the work of reflexive monitoring. By this I mean socially patterned mechanisms for making sense of meaning of work and its objects, patterns of participation and action, and their outcomes. From this stems the proposition that: (H10) Reflexive Monitoring is dependent on work that defines and organizes the everyday understanding of sickness. Reflexive monitoring may involve judgments about the value, utility and effectiveness of elements of elements of sickness work. These are made with reference to socially patterned beliefs about desirable states, configurations of practices, and their outcomes. This leads to a further proposition: (H11) Sickness work is shaped by factors that promote or inhibit appraisal. One way of characterising late modernity would be as an epidemiological epoch, in which sickness is constantly measured and monitored—what Armstrong (Armstrong 1995) has called ‘surveillance medicine’—in which sickness work is accomplished by large scale social institutions (in which Universities, government departments, healthcare agencies and pharmaceutical companies all play important parts). Systematization is central to this process, and it refers to the methodological formality of these judgements and the rationalities that underpin them. But while regular and organized procedures for monitoring and ongoing assessment of the process and impact sickness work may involve highly structured and formal mechanisms, this need not be at a societal level. Instead , monitoring individuals is now a crucial component of sickness work. As Pascale Lehoux (Lehoux 2008) has shown, technologies of knowledge production and interpretation that serve this purpose proliferate, and distributing information across networks. The rise of the ‘wireless patient’ is one of the important features of late modern sickness work (May et al 2005), because it is framed by patterns of communal appraisal in which the work of monitoring no longer sits in one place, but can be distributed according to available bandwidth (Percival & Hanson 2006). Of course, communal appraisal co-exists with individual appraisal that relies on experiential and unsystematic practices of judging the value and outcomes of sickness work, and from which stem individual commitments to its conduct and performance—for example, in work around assessing blood sugar levels and dietary management in diabetes (Bissell et al 2004). More immediately, both communal and individual appraisal may lead to attempts at reconfiguration in which ideas about the use and utility of elements of sickness work are subverted, modified, or reconstructed, for
    
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    example in the reorganization of activities that engage symptoms and services simultaneously (Mair et al 2008). This leads us to a final proposition: (H12) Reflexive monitoring requires that actors invest in understanding sickness work and its implications.
    
    CONCLUSION My brief in this chapter was to ‘retheorize’ the clinical encounter, and to do this I have applied a theoretical model of the work of embedding practices in the life-world to the business of sickness work. In doing so, I have extended a set of generic theoretical proposals about normalization processes (May & Finch 2009) and specific propositions about the management of chronic disease (May 2009) into a general account of sickness work. Further, I have offered twelve hypotheses about the forms, constraints, and investments through which such work is operationalized and accomplished. There is an important general sociological point here, which is that the routine embedding and accomplishment of practices is one of the primary means by which social structures are produced and reproduced (Huber 1991). Like Buetow et al (2009), and other proponents of ‘convergence’ hypotheses, my account rests on the work of clinicians and their patients—the constituents of the clinical encounter—being increasingly intimately linked in late modernity. In this chapter, I have tried to show how this work is not just a matter of convergent technical knowledge and the delegation of decisions to patients. Instead, I have tried to show how ‘retheorizing’ the clinical encounter at the beginning of the 21st century actually requires us to take note of sometimes mundane, but sometimes very complex and demanding, work that is increasingly distributed rather than delegated. One striking feature of the analysis offered above is that nowhere in it is this work specifically attributed to patients or doctors. This is because I have argued that sickness work is distributed horizontally and vertically through networks that extend a long way from the doctor’s office. There are obvious parallels between the view that I take in this chapter and actornetwork theory in its classical formulation (Latour 2005). However, although I have drawn on the sociology of science and technology (Jensen 2008; Webster 2007), I have aimed for a sociological account that emphasises agency and action, rather than actornetworks. Sickness work is truly agentic, and it involves the production and investment of meaning, participation, action, and understanding. All of this takes place through highly differentiated symbolic processes and equally variable material contexts. It belongs to both professionals and patients, and to extended networks who may be both or none of these things, who are here conceived as agents, doing work. As they do this work, they contribute to the production and reproduction of social structures, and they do so in a highly dynamic way—illness is not something that is done to sick people, but rather sickness is co-produced as people work together across the terrain of an increasingly corporate ecology.
    
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    References Armstrong D. 1995. The rise of surveillance medicine. Sociology of Health and Illness 17:393-404 Bissell P, May CR, Noyce PR. 2004. From compliance to concordance: barriers to accomplishing a reframed model of health care interactions. Social Science and Medicine 58:851-62 Bowker G, Leigh-Star S. 1999. Sorting Things Out. Classification and Its Consequences. Cambridge MA: MIT Press Brackenbury H. 1935. Patient and doctor. London: Hodder and Stoughton Buetow S, Jutel A, Hoare K. 2009. Shrinking social space in the doctor-modern patient relationship: A review of forces for, and implications of, homologisation. Patient Education and Counseling 74:97-103 Bury M. 1982. Chronic illness as biographical disruption. Sociology of Health and Illness 4:167-82 Chapple A, May C, Campion P. 1996. Predictive and carrier testing of children: professional dilemmas for clinical geneticists. European Journal of Genetics in Society 2:28-38 Charmaz K. 2006. Good Days, Bad Days: The Self in Chronic Illness. New Brinswick, NJ: Rutgers University Press Chumbley GM, Hall GM, Salmon P. 1999. Why do patients feel positive about patientcontrolled analgesia? Anaesthesia 54:386-9 Clarke AE, Mamo L, Fishman JR, Shim JK, Fosket JR. 2003. Biomedicalization: technoscientific transformations of health, illness, and U.S. biomedicine. American Sociological Review 68:161-94 Clarke JN. 2000. The search for legitimacy and the "expertization" of the lay person: The case of chronic fatigue syndrome. Social Work in Health Care 30:73-93 Cockerham WC. 2005. Medical sociology and sociological theory. In The Blackwell Companion to Medical Sociology, ed. WC Cockerham, pp. 3-22. Oxford: Blackwell Publishing Conrad P. 2007. The Medicalization of Society: On the Transformation of Human Conditions into Treatable Disorders. Baltimore: Johns Hopkins University Press Corbin J, Strauss A. 1988. Unending Work and Care: Managing Chronic Illness at Home. San Francisco: Jossey-Bass Cornwell J. 1984. Hard-Earned Lives: Accounts of Health and Illness from East London. London: Routledge Gately C, Rogers A, Sanders C. 2007. Re-thinking the relationship between long-term condition self-management education and the utilisation of health services. Soc. Sci. Med. 65:934-45 Gerhardt U. 1989. Ideas about Illness: An Intellectual and Political History of Medical Sociology. Basingstoke: London Glaser BG, Strauss A. 1965. Awareness of dying. Chicago: Aldine Good BJ. 1994. How medicine constructs its objects. In Medicine, rationality and experience, ed. BJ Good, pp. 65-87. Cambridge: Cambridge University Press Graham R. 2006. Lacking Compassion Sociological Analyses of the Medical Profession. Social Theory and Health 4:43-63
    
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    Hall O. 1951. Sociological research in the field of medicine: progress and prospects. American Sociological Review 16:639-44 Henderson LJ. 1935. Physician and patient as a social system. New England Journal of Medicine 212:819-23 Heritage J, Maynard DW. 2006. Problems and prospects in the study of physician-patient interaction: 30 years of research. Annual Review of Sociology 32:351-74 Huber J. 1991. Introduction. In Macro-micro linkages in sociology, ed. J Huber, pp. 1-18. Englewood Cliffs NJ: Sage Jensen C. 2008. Power, Technology and Social Studies of Health Care: An Infrastructural Inversion. Health Care Analysis 16:355-74 Kendall E, Rogers A. 2007. Extinguishing the social?: state sponsored self-care policy and the Chronic Disease Self-management Programme. Disability and Society 22:129-43 Langstrup H. 2008. Making connections through online asthma monitoring. Chronic Illness 4:118-26 Latour B. 2005. Reassembling the Social: An Introduction to Actor Network Theory. Oxford: Oxford University Press Lehoux P. 2008. The duality of health technology in chronic illness: how designers envision our future. Chronic Illness 4:85-97 Mair FS, Hiscock J, Beaton SC. 2008. Understanding factors that inhibit or promote the utilization of telecare in chronic lung disease. Chronic Illness 4:110-7 May C. 2007. The clinical encounter and the problem of context. Sociology 41:29-45 May C. 2009. Mundane Medicine, Therapeutic Relationships, and the Clinical Encounter.’ In (eds.) In Handbook of the Sociology of Health, Illness, and Healing: A Blueprint for the 21st Century, ed. B Pescosolido, JA Martin, A Rogers. New York: Springer May C, Allison G, Chapple A, Chew-Graham C, Dixon C, et al. 2004. Framing the doctor-patient relationship in chronic illness: a comparative study of general practitioners' accounts. Sociology of Health & Illness 26:135-58 May C, Finch T. 2009. Implementation, embedding, and integration: an outline of Normalization Process Theory. Sociology In Press May C, Finch T, Mair F, Mort M. 2005. Towards a wireless patient: chronic illness, scarce care and technological innovation in the United Kingdom. 61:1485-94 May C, Rapley T, Moreira T, Finch T, Heaven B. 2006. Technogovernance: Evidence, subjectivity, and the clinical encounter in primary care medicine. Soc. Sci. Med. 62:1022-30 May CR, Rose MJ, Johnstone FC. 2000. Dealing with doubt. How patients account for non-specific chronic low back pain. Journal of Psychosomatic Research 49:223-5 Melia K. 1987. Learning and working: the occupational socialization of nurses. London: Tavistock Publications Ltd O'Neill J. 1986. Sociological Nemesis: Parsons and Foucault on the therapeutic disciplines. In Sociological Theory in Transition, ed. ML Wardell, SP Turner, pp. 21-35. London: Allen and Unwin Ong BN, Hooper H. 2006. Comparing clinical and lay accounts of the diagnosis and treatment of back pain. Sociology of Health & Illness 28:203-22
    
    14
    
    Orr J. 2006. Panic Diaries: A Genealogy of Panic Disorder. Durham NC: Duke University Press Parsons T. 1951. The social system. London: Routledge & Kegan Paul Parsons T. 1965. Social Structure and Personality. New York: Free Press Parsons T. 1977. On building social system theory: a personal history. In Social systems and the evolution of action theory, ed. T Parsons, pp. 22-77. New York: Free Press Percival J, Hanson J. 2006. Big brother or brave new world? Telecare and its implications for older people's independence and social exclusion. Crit. Soc. Policy 26:888909 Petersen A, Lupton D. 1996. The new public health: health and self in the age of risk. London: Sage Publications Ltd Pilgrim D, Rogers A. 1993. A sociology of mental health and illness. Buckingham, Philadelphia: Open University Press Rapley T. 2008. Distributed decision making: the anatomy of decisions-in-action. Sociology of Health & Illness 30:429-44 Rogers A, Kennedy A, Nelson E, Robinson A. 2005. Uncovering the limits of patientcenteredness: Implementing a self-management trial for chronic illness. Qual. Health Res. 15:224-39 Roth J. 1963. Timetables. Indianapolis: Bobbs Merrill Salmon P. 2000. Patients who present physical symptoms in the absence of physical pathology: a challenge to existing models of doctor- patient interaction. Patient Education and Counseling 39:105-13 Salmon P, Manyande A. 1996. Good patients cope with their pain: Postoperative analgesia and nurses' perceptions of their patients' pain. Pain 68:63-8 Sinclair S. 1997. Making doctors: an institutional apprenticeship. Oxford: Berg Timmermans S, Haas S. 2008. Towards a sociology of disease. Sociology of Health & Illness 30:659-76 Twaddle AC. 1980. Sickness and the sickness career: some implications. In The Relevance of Social Science for Medicine, ed. L EIsenberg, A Kleinman, pp. 11134. Dordrecht: Reidel/Kluwer Ware NC. 1999. Toward a model of social course in chronic illness: The example of chronic fatigue syndrome. Culture Medicine and Psychiatry 23:303-31 Webster A. 2007. Health, Technology and Society: A Sociological Critique. Basingstoke: Palgrave Macmillan Whelan E. 2007. 'No one agrees except for those of us who have it': endometriosis patients as an epistemological community. Sociology of Health & Illness 29:95782
    
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    Regulation of clinical consumption (effectiveness) Workload (redistributed)
    
    Regulation of personal consumption (choice)
    
    Expert professional work (Clinical Governance)
    
    Information (shared)
    
    Prudent patient work (Activated patienthood)
    
    Responsibility (diffused)
    
    External regulation of professional practice
    
    External constraints on patient selves

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