The new working arrangements entail transformations in the work carried out by healthcare professionals, both with regard to new procedures, and to interacting with home patients. Based on a comparative study of nursing practices at a call-center and in a clinic, Oudshoorn (2009) argues that healthcare services are not merely replicated when moved from a clinic to a telemedical service at a call-center, but that the transformation
involves new practices that create a different kind of care, changing the character of the work and healthcare service, as well as perspectives on health conditions (Oudshoorn, 2009, 390, 402).
Fundamental to the change in practice is an alteration in the interaction with the patient:
Nurses at a cardiology clinic rely on physical proximity, where they “physically touch and care for patient bodies” (ibid., 393), and in connection with this, attempt to create a narrative proximity. Narrative proximity refers to the practices by which healthcare professionals get to know the patient, by hearing and trying to understand the patient’s story (Oudshoorn 2009, 393, referring to Malone 2003, 2318). However, in telemedical treatment, physical and narrative proximity are replaced by communication mediated by information and communication technology, and data from biosensors; what Oudshoorn calls digital proximity (ibid., 397). Digital proximity requires that the telenurses23 develop new communication skills, in particular when using an ordinary phone (versus a video conversation): they must learn to persistently ask the home patient to describe symptoms that nurses have traditionally been able to see for themselves; they must learn to listen to the home patient, to the breathing, and to what is said implicitly; and to be able to assess the severity of the situation by listening to the anxiety of the people in the background (ibid., 399). Moreover, digital proximity at the call-center is based on a strict protocol for interacting with the home patient. The call-center monitors automatically transmit data on blood pressure and weight, which home patients measure on a daily basis. Alterations trigger an alarm at the call-center, and the telenurse must call the home patient. A protocol on the computer then guides the telenurse through a specific line of questioning, to determine the urgency of the problem (Oudshoorn 2009, 398).
According to Oudshoorn, the new arrangement causes transformations in which the focus shifts from establishing narrative proximity through open conversation, to acting on data generated by devices in the home, and pursuing an inquiry into the condition by means of protocol-driven communication. Furthermore, the role of the nurse changes from that of a counselor for the patient and relatives, to improve self-care on an optional basis, to acting as an assessor of data, where self-care, in the form of measuring blood pressure and weight, becomes an obligation. From this perspective, transformations occur not only in the work of the telenurse, but also in the work of home patients, and imply a
23 The word “telenurses” is Oudshoorn’s term for nurses employed at the call-center, who interact with home patients through telephone conversations.
change in perspective on the condition being treated. Oudshoorn argues that the character of the condition treated alters from a focus on illness24, which includes the experiences of the patient, to that of a disease, which focuses exclusively on the condition from a biomedical point of view (Oudshoorn 2009, 403).
Healthcare services based on digital proximity have been criticized as fragmenting home patients into decontextualized representations in the form of images, graphs, and other types of data, where these representations, rather than the whole patient and how the patient experiences the disease and its development, comprise the information on which a diagnosis is based (Mort et al. 2003, 284). However, it is widely acknowledged within STS that persons have multiple memberships in social worlds, as the very notion of
“home patient” implies, and that humans are what Mol (2002) would describe as multiple, in the sense that they are practiced differently in diverse contexts. From this perspective, fragmentation is not a negative phenomenon to be avoided, but is instead a fundamental condition of being human. Oudshoorn’s analysis does not attempt to judge the two working arrangements. Rather, her goal is to demonstrate that work and healthcare services are not replicated in telemedical solutions, but that transformations occur, which alter the services and the character of the work carried out by healthcare professionals, and the way in which patient condition is perceived. In a related study of home monitoring of ECGs performed by home patients, described in chapter 4, Oudshoorn (2008) identifies other types of work that are redistributed in new working arrangements.
While the purpose of home monitoring of heart conditions was to relieve cardiologists, this does not mean that work disappears. Instead, work is redistributed to others in the working arrangement: to home patients, who become diagnostic agents; to telenurses, who must engage in inclusion work, persuading patients who are unsure of their ability to master technological devices to participate actively in remote ECG monitoring (Oudshoorn 2008, 280); to teledoctors, who make preliminary analyses of the data and perform sentimental work, reassuring anxious home patients who are worried about the severity of their condition (ibid., 281); to the general practitioner, who has jurisdictional responsibility for analyzing the data. While much of this work is, to a large extent, invisible to others, and entirely overlooked in formal work descriptions, it nevertheless plays an important role in new working arrangements.
24 For a discussion of the distinction between “illness” and “disease”, see Hahn 1984.
From this perspective, different working arrangements result in work being transformed and distributed in diverse ways. In this regard, it may be useful to compare the Dutch solution, reported on by Oudshoorn, with a Danish solution evaluated by Dinesen et al.
(2007a; 2007b; 2008). The two solutions address the same issue of monitoring heart patients in the home, but do so in different ways: The Dutch solution relies on digital proximity, as described above, while the Danish one is based on physical proximity, but has moved the monitoring into the home, in the form of a visiting district nurse. The working arrangement of physical proximity in a different location also causes transformations and redistribution of work. First, work is redistributed from the ward to the visiting nurse, as she now has to participate in teleconferences with the hospital team, and will often have to learn more about cardiology. The hospital nurse experiences a transformation in her work, as she no longer has to engage in the daily monitoring of the patient who is now being treated at home, but acquires a new task, as she now has to discharge the same patient twice, once from the ward, and again from home treatment (Dinesen et al. 2007, 8). Secondly, an issue arises regarding the character of care in the home. Dinesen et al. (2008) state that the majority of home-treated cardiac patients experienced a great difference between the monitoring they underwent at the cardiology ward, and when cared for at home: At the ward, they experienced the monitoring as being under surveillance, which they found rather stressful. In contrast, they regarded the home monitoring as being looked after, and felt more relaxed (Dinesen et al. 2008, 244).
However, the family caregivers experienced an invasion of privacy, as they had to alter routines in order to accommodate the schedule of the visiting nurse. Thus, even when the new working arrangement is based on physical and narrative proximity, it still implies a redistribution of work and transformations in care, and gives rise to other concerns.
Wang and Barnard (2008) also touch briefly on the topic of privacy, and state that parents of ventilator-dependent children found it stressful to have nurses living in the home, as they felt it interfered with the privacy of the home and parental control (Wang
& Barnard 2008, 504).
Negotiations of public and private spheres in the home are often delicate, as in Western countries the home is often regarded as a private sanctuary, making the presence of representatives of public authorities be perceived as a potential threat or invasion of privacy (Angus et al. 2005; Dyck et al. 2005)25. The performance of home care therefore
25 This tension has also been addressed in terms of privacy and security when handling and transmitting data (e.g. Meingast et al. 2006; Rindfleisch 1997).
demands much collaborative work on part of visiting nurses, home patients, and family caregivers (e.g. see Spiers 2002). Working arrangements that introduce healthcare technologies from the social world of the hospital into the home, for example, in the form of remote monitoring such as the Dutch telemedical solution, have been criticized as extending the medical gaze, penetrating the home with a biomedical discourse and the vision of a healthy body (Olesen 2010, 312). From this perspective, healthcare technologies continue to enhance the asymmetrical power relationship between the social world of the professional sector and that of the popular sector. In the following section, I present a critique of this power relationship, and discuss how the introduction of healthcare technologies creates opportunities for the negotiation of structures of healthcare services.