e-Health and cancer care
Chemotherapy is one of the primary treatment modalities in cancer care. Side-effects such as nausea, vomiting, fatigue, diarrhoea and neutropenia are common, some of which can be life-threatening (Richardson & Ream 1996, Du et al. 2002, Dranitsaris et al. 2005, Chen-Hardee et al. 2006, Kuderer et al. 2006). Thus, effective monitoring and management of patients’ symptoms is critical in preventing severe toxicities and their consequences.
However, symptoms in people with cancer are often poorly assessed and managed (National Institute for Health, 2002), and factors such as inadequate patient–provider communication and poor symptom assessment have been cited as contributory factors (Donovan et al. 2005, Cheville et al. 2008).
Researchers report improvements in quality of life and symptom control as a consequence of using technology to communicate between patients and healthcare professionals, reductions in the rate of hospitalizations, emergency department visits and cost savings (Louis et al. 2003). Patients also appear to have positive views of using this type of technology, reporting improvements in communication with healthcare providers (Maguire et al. 2005, Kearney et al. 2006).
The Advanced Symptom Management System (ASyMS©)
The ASyMS© system is an example of the use of technology in cancer care, which has been trialled in Scotland (Kearney et al. 2003). It is a mobile telephone-based remote symptom monitoring system which is used to log and manage the side-effects of chemotherapy in the home care setting (Kearney et al. 2000, 2003, 2006, Maguire et al. 2005). Patients using the system complete a symptom questionnaire on a mobile phone twice daily at home and send this information directly to their hospital-based healthcare professional. Self-care advice is then offered, linked to the symptoms reported. If the patient reports worrying symptoms, an alert (either amber or red, depending on the seriousness of symptoms) is generated to the healthcare professional based at the hospital via a 24 hour dedicated pager system. The healthcare professional can then view the symptoms that the patient has just reported via a secure webpage and contact the patient as appropriate. One healthcare practitioner has the ability to monitor multiple patients at a time through this system.
Foucault and the technologization of health care
While technological advances have been welcomed by healthcare providers, notions of surveillance (i.e. using technology to ‘keep an eye’ on or monitor people who are not physically present in hospital) are brought into play, indicating that a Foucauldian analysis may shed important and interesting light on the topic. The importance of Foucault’s work lies in the challenges it poses for many of the otherwise taken-for-granted aspects of contemporary health care, for example the notion that doctors are the unassailable authorities in illness (Cheek & Porter 1997).
Power and knowledge are two central themes in Foucault’s writing, and they create and reinforce each other. Power and knowledge are intimately woven together within new systems that use technology to perform observations from a distance.
A number of researchers have made use of Foucault’s work. For example, May (1992) explores the ways in which nurses’ accounts of their work and relationships with patients reflect a social discourse. Henderson (1994) examines patients in intensive care and the power of medical practices in shaping knowledge, thereby dictating and limiting the quality of nurse–patient relationships. Heartfield (1996) explores the discursive construction of the patient and the invisible nurse, while Cotton (2001) draws on Foucauldian concepts of power–knowledge and discourse to interrogate conceptualizations of reflection and reflective practice in contemporary nursing literature.
Surveillance in health care has been discussed as an extension of the ‘medical eye’ (Armstrong 1995, p. 400). Armstrong documents a progression in the formulation of health and illness in medicine, moving from bedside to hospital to laboratory medicine. An expansion of the hospital and laboratory approaches incorporates ‘surveillance medicine’, focusing on health-status monitoring.
From a Foucauldian perspective, ASyMS© and other similar systems, act out the micro power structures operating within health care. This focus on micro (rather than macro) power structures illuminates the everyday and routinized uses of power in people’s lives. The body (and particularly the sick body) is subject to such power. Indeed, as one commentator on Foucault suggests: ‘the body itself is invested by power relations’ (Rabinow 1991, p. 171), and new technologies are methods that contribute to how people are made subjects and potentially subjugated within the healthcare system.
In Foucault’s work, the body is drawn into and disciplined by the machinery of politics. He describes this as ‘bio-power’, and suggests that bodies are carefully regulated and controlled:
[the body’s] supervision was effected through an entire series of interventions and regulatory controls: a biopolitics of the population. (Foucault 1979, p. 139, original emphasis)
Thus, there is potential for exploring how such regulatory controls and supervision is operationalized, and how power is wielded and negotiated within health care when new technologies are applied.
Foucault (1993) develops a theory of the medical gaze, where person and disease are separated and only the physical is attended to and observed. Surveillance is a key component of this. Twigg suggests that ‘the medical encounter is the supreme example of surveillance’ (Twigg 2000, p. 12). As applied to e-health and cancer care, this means that healthcare practitioners exert power through their role as observers of the body. They have a specific medically-oriented regard towards monitoring the disease. This medical gaze is one way in which power is acted out and how ‘docile bodies’ are created. Use of the terms power, surveillance and docile imply moral objections, but Foucault argues that they are neither good nor bad. Indeed, the term ‘docile’ is not used in its everyday meaning, but a specific technical one. Disciplinary practices create a context for a ‘docile’ state to emerge. This is typified in the caricature of the submissive patient, lying silently (for fear of interrupting) during a ward round, while physicians conduct their observations and discuss the nature of the disease and treatment. Observation and control are both critical components in producing docile bodies, and the notion of internalizing the locus of power drives this. In the caricature presented above, this internalization is acted out by the patient’s submissive and silent role in the consultation, indicating that they understand the medical power dynamic, that it is the physician wields the power in the interaction.
Foucault (1979) develops and discusses this notion of the docile body in theorizing the domination and disciplinary practices over people, and the extent to which the body ‘may be subjected, used, transformed and improved’ (Rabinow 1991, p. 180). The role of observation and surveillance is critical here. He describes medical perception involving ‘initiating the endless task of understanding the individual’ (1973/2003, p. 15) and disaggregating the component parts of the embodied illness. He warns that:
Doctor and patient are caught up in an ever-greater proximity, bound together, the doctor by an ever-more attentive, more insistent penetrating gaze. (pp. 15–16)
Foucault’s work can thus be read as a warning about the adoption of practices which would further extend the medical gaze. The use of technology in supporting the implementation of a policy – delivering care in people’s homes and communities – has a potentially troubling outcome for patients.
As policy is rolled out, however, technologies will increasingly be used to support patients in their local settings and to promote an anticipatory and preventive model of care. Technology, as part of healthcare delivery, might be considered as:
A reorganization in depth, not only of medical discourse, but of the very possibility of a discourse about disease (Foucault 1973/2003, p. xxi)
Use of these technological systems simultaneously recruits patients as both objects and instruments of power through observation and self-surveillance. Foucault’s description of technologies of power in prisons exemplifies the way in which the observed are recruited into self-surveillance:
The perfection of power should tend to render its actual exercise unnecessary; that is this architectural apparatus should be a machine for creating and sustaining a power relation independent of the person who exercises it; in short, that the inmates should be caught up in a power situation of which they are themselves the bearers. (Foucault 1977, p. 201)
Drawing on ideas developed from Bentham’s panopticon, Foucault (1977) prioritizes notions of surveillance which are relevant to current e-health strategies. For example, the use of the ASyMS© system could be understood as centralizing and normalizing layers of medical surveillance. Surveillance is orchestrated through environmental manipulations, which might be considered architectural disciplinary practices. Operationalizing this notion results in a single ‘guard’ (or nurse/doctor in health care) who is able to watch dozens of people simultaneously because of the physical organization of the environment. The ASyMS© system extends this potential, allowing almost limitless numbers of patients to be under the gaze of one professional and offering a mechanism to observe and report on symptomatology. It could be viewed as a ‘perfect disciplinary apparatus’ which allows a single observer to survey all people constantly (Rabinow 1991, p. 191).
Medical staff, with pagers and passwords to data servers, have access to information about a patient’s symptoms and wellbeing. However, unlike prisoners in the panopticon, the patient also gains knowledge about their own health status, and is able to keep track of their own symptoms and side-effects and gain knowledge to address worrying toxicities; perhaps more importantly, they can opt out of the surveillance – unlike prisoners – thus rendering the power of the professional obsolete.