ILLNESS IS A PLURAL: HOMECARE, GOVERNMENTALITY, AND REFRAMING THE WORK OF PATIENTHOOD Carl May
    
    To be published in In Sickness and in Health: Government of the Self in the Clinic and the Community Edited by: Mary Ellen Purkis and Christine Ceci (Victoria 2010)
    
    Carl May – Illness is a Plural
    
    I This volume celebrates three meetings held over a period of two weeks in Victoria, British Columbia, in April 2009.1 They focused consecutively on the emerging field of homecare, on Governmentality in sickness and in health, and on the problems of redesigning patient care at a system level. I was privileged to be invited to make brief contributions to two of these meetings, and my brief in these contributions was to reflect on the relevance of my theoretical and empirical work, around socio-technical change in healthcare, to understanding some contemporary shifts in the experiences of patients and professionals. Underpinning all three of these meetings was the sense that healthcare is at a cross-roads, and that this cross-roads defines more than the problems of demography and costs that policy makers – on both sides of the Atlantic – sometimes seek to make the focus our attention. Indeed, the current healthcare crisis can be characterized as the price that the advanced economies must pay for successfully overwhelming the mass of infectious and acute disease that winnowed their populations until the midtwentieth century (Holman, 2006). Nevertheless, in those same advanced economies these successes are infrequently celebrated by policy-makers, who see in place of those winnowed generations an ever-growing cohort of older people with multiple chronic co-morbidities, and who require care over lifetime illness careers in place of cure for episodes of acute disease. The policy problem is therefore composed of a set of anxieties about the management of increasingly scarce healthcare resources, in the face of ever growing demands. There is a sub-text to this, too. It is that sick older people are a problem because they subtract tax-dollars from the interests of younger healthy people. In the face of these shifts, healthcare researchers are often pressed to see their task as contributing to the management of scarcity (perhaps by finding rational and ethical bases for rationing and for the withdrawal of care), and to respond to this continually growing demand on social resources by finding technological fixes for it (perhaps by redirecting it into new professional or organizational systems of practice). Governmentality in contemporary healthcare is expressed, therefore, in patterns of technogovernance at the micro-scale (May et al., 2006), and in the reformulation of professional-patient relations through incremental bureaucratization and the corporate impulses of healthcare providers at the macro-scale (May, 2007). In this short chapter, I want to make three claims about the effects of these processes on the practices of healthcare, and speak to the necessity of theory through which these effects can be defined and interpreted.
    
    I am grateful to Mary Ellen Purkis and the ISIH Organizing Committee for their invitation to give the opening address at ISIH 2009. Work leading to this Chapter was funded through personal research fellowship awarded by the UK Economic and Social Research Council (Grant RES 0002 700 84), this support is gratefully acknowledged.
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    Carl May – Illness is a Plural
    
    II Our starting point must be the traditional way of thinking about patient-hood, in which the patient is assigned a role in relation to clinical practices and their contexts. Whether we see this relation to in terms of a very passive role or, at the other end of the spectrum, as a very active consumer of healthcare, this is a view that relies on the application of old asymmetries of power and knowledge. This is equally true of both the Parsonian assumptions underpinning ‘sick role’ theory (Parsons, 1951; Parsons, 1975) and of more recent postmodern accounts (for example, Fox, 1993; Morris, 1998). Here, psyche and soma are objects to be measured and manipulated through interactions with medical knowledge and practice. But as treatments become ever more complex, and the burden of labor and time that they present to patients becomes more demanding, we need to think about the divisions between professionals and patients, between the healthy and the sick, and the sick and their significant others. This is because of the increasing burden of technical expertise, self-monitoring, selfcare and routine symptom management, record keeping and the accumulation of information, and organizational and coordinating labor that is being shifted from the clinic into the home (May, 2009). Here the population of individualized patients provides an insufficient workforce to perform the business of healthcare, work has to be further distributed to family and friends as new machines are incorporated into the home, web-interfaces opened up, and telecare systems operationalized. We can find a generative principle of the emergent forms of homecare at work here: The patient is not enough. (The burden of illness now demands more than a co-operative patient, instead it requires a compliant network.) If the patient is not enough for healthcare systems, then the work of self-care and healthcare is an ever-expanding universe of labor. Parsons (Parsons, 1965) argued that we should see sickness as a ‘job of work’ and that is precisely what it has come. While older people with multiple chronic co-morbidities are claimed to be a drain on resources and a brake on national economic competitiveness, they too are drained, as substantial burdens of work are shifted to them. Of course, the work of sickness has permeable boundaries, multiple contingencies of practice, and it radically alters biographies and identities (Bury, 1982; Charmaz, 2006). One way of seeing this problem has been, from the earliest days of social science analysis, by applying the notion of illness career. Chronic illnesses are managed and modified over lifetime trajectories. They ebb and flow, suffer instabilities and exacerbations, but are equally frequently experienced as the constant and barely changing background radiation of a limiting universe. If we think again about the experience as illness, we can see these careers not as evidence of the inevitable failure of the body, but as a series of episodes of sickness engaged with implementation projects, in which different assemblages of actors and actants –
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    Carl May – Illness is a Plural
    
    drawn out of multiple territories and trajectories – are committed to the business of care. These projects multiply the possibilities of treatment and add steadily to its burden because they fragment experiences of care and threaten the individualization of patient care upon which many of the claims of professional ideologies rest. This leads us to a second generative principle: Illness is a plural. (In a world defined by multiple chronic co-morbidities, sickness is experienced as an assemblage of management projects rather than a phenomenological unity.) Now, the spatial and temporal fragmentation of care means that relations between sick people and the sources of their care are often unstable and emergent, not simply because of the regularities of titration, but because of changing constructs of evidence and the timetabling of careers and credentials. We need therefore need minimally disruptive healthcare, and to consider the burden of illness in relation to the burdens and incivilities imposed on people by the proliferation and expansion of treatments, and fragmented and uncoordinated patterns in the delivery of care (May et al., 2009b). The practices of self-care, homecare, and formally defined professional care take are organized, increasingly around the multiplication of coordinating activity. This takes us to a third generative principle. The co-ordination of co-ordination is not a paradox. (The multiplication of coordination gives recognition to the complexity of contemporary healthcare.) In these contexts the home as the center of homecare is no longer a bounded domestic territory, but is now a suburb of the healthcare system itself. It has organizational significance as a place to which clinically defined work can be relocated, and it is this – rather than any ideological or ethical impulse – that gives truth to the claim that patients are partners in their care. Of course patients are ‘involved’ in their care. They and their significant others are enrolled as unpaid workers in these extended and extending systems of practice. They contribute not only practice (doing or not doing what they are asked by health professionals, but by building a body of technical expertise that is circulated through epistemological communities that exist in parallel, and sometimes competition, with the repositories of clinical knowledge and practice to which they are supposed to defer
    
     
    
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    Carl May – Illness is a Plural
    
    III Because of the empirical shifts that I have sketched out above, we can now dispose of two analytic conventions. First, that accounting for experiences of illness and its meanings, and the biographical disruptions that stem from it – means that our analytic narratives must be primarily focused on the phenomenology of sickness. Second, that accounts of experiences of illness are an adequate response to the assumption of scarcity and the problem of rationing. The phenomenology of illness and the problem of scarcity are, it seems, united by the work that sick people and their others do to stay on top of their symptoms, to stay engaged with their treatments, and to co-ordinate and manage the combined burdens of illness and care. Theories of socio-technical change have a good deal to offer us as we attempt to understand the shift to homecare because they refuse to divide the social and technical, and because they also refuse to play out the technical as either determined or determining. Homecare is not the necessary outcome of cost control but is rather the product of multiple contingencies. It is one of a number of possible results of interactions between the ‘social’ and the ‘technical. In part because this shift is an epiphenomenon of deeper and more fundamental changes in the way that healthcare systems themselves deal with the problems of coordinating coordination, of the plurality of illness, and the inadequacy of patient-hood. Where do the three generative principles that I have outlined above take us? One place that they might take us is into the domain of the socio-technical as it is outlined in Science and Technology Studies (e.g. Webster, 2007). This is where I and my colleagues have been building theory that seeks to explain the how ‘innovations’ (defined broadly) are implemented, embedded, and integrated in practice by healthcare providers – and the ways that the management of health technologies (again defined broadly) in practice is increasingly distributed (May and Finch, 2009; May et al., 2009a). The point of emphasis here is that the more that we have examined the practices of healthcare technologies and organizations, the more we have observed the collapsing boundaries between patient, carer, worker and professional. Their work is being redistributed within compliant networks. This redistribution parallels the collection and systematization of knowledge about the health of the self, and assumes a diffuse (and increasingly, unpaid) labor force. In relation to which, assumptions about the ownership of knowledge and practice can be designed out of artifacts and systems, as well as designed into them.
    
     
    
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    References
    
    Bury, M., 1982. Chronic illness as biographical disruption. Sociology of Health and Illness. 4, 167-182. Charmaz, K., 2006. Good Days, Bad Days: The Self in Chronic Illness. Rutgers University Press, New Brunswick, NJ. Fox, N. J., 1993. Postmodernism, Sociology and Health. Open University Press, Buckingham. Holman, H. R., 2006. Chronic illness and the healthcare crisis. Chronic Illness. 1, 265274. May, C., 2007. The clinical encounter and the problem of context. Sociology. 41, 29-45. May, C., Mundane Medicine, Therapeutic Relationships, and the Clinical Encounter.’ In: B. Pescosolido, et al., (Eds.), Handbook of the Sociology of Health, Illness, and Healing: A Blueprint for the 21st Century. Springer, New York, 2009. May, C., Finch, T., 2009. Implementation, embedding, and integration: an outline of Normalization Process Theory. Sociology. 43, 535-554. May, C., et al., 2009a. Development of a theory of implementation and integration: Normalization Process Theory. Implementation Science 4, article 29. May, C., et al., 2009b. We need minimally disruptive medicine. British Medical Journal. 339, b2803-. May, C., et al., 2006. Technogovernance: Evidence, subjectivity, and the clinical encounter in primary care medicine. Social Science & Medicine. 62, 1022-1030. Morris, D. B., 1998. Illness and culture in the postmodern age. University of California Press, London. Parsons, T., 1951. The Social System. Routledge & Kegan Paul, London. Parsons, T., 1965. Social Structure and Personality. Free Press, New York. Parsons, T., The Sick Role and the Role of the Physician Reconsidered. Action Theory and the Human Condition. Free Press, New York, 1975, pp. 17-34. Webster, A., 2007. Health, Technology and Society: A Sociological Critique. Palgrave Macmillan, Basingstoke.
    
     
    
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