ABSTRACT
This chapter focuses on the tension between complexity of caring practices and the normative dimension of providing good care. The question we raise in this chapter is whether practice theory provides conceptual space for the good of the patient, being a vulnerable person, longing for cure and support in dire times, receiving care under conditions of complexity? Our answer is that this is possible, by considering the epistemological and moral position of a patient as someone dealing with illness and social vulnerability as well (‘precarity’). The very character of being a patient is that he or she is suffering. Suffering, however, is not specific to patients. As the French philosopher Paul Ricoeur puts it, suffering and more broadly being the subject of forces displays what is common to all humans. People are ‘passible’: they constantly undergo processes, they are subject to time and material circumstances, such as heat, light and air pressure (Ricoeur, 1986: 125). People also constantly undergo acts of other people (pep talk, admonishments, putting a needle in one’s back for diagnostic reasons, caressing fingers). And people undergo diseases. Of course some diseases are self-inflicted. But even then, when the disease is raging or slumbering in the body, people undergo it: they feel the contractions, the throbbing pain, the itching. People are also actors but with the constant reality of being ‘passible’. Thus Ricoeur balances his idea of human agency with his observation that people are sentient beings undergoing situations, time and space; they are both subjects and objects and often at the same time. The neologism passibilité points at something different than passivity. When passivity means remaining without action, passibility does indicate movements: inner movements, even if people are not always consciously aware of them. Undergoing evokes inner movements: repulsion, attraction, contraction etcetera. In ethics this interplay of action and undergoing realities is a major shift: what if human acts are not just reigned by intention, decision, will, by principles, by duty, by rational accounts of consequences but by mere passibility as well? We thus propose that it is not evident that a patient is an actor in care practices similar to the acting roles of nurses, physicians, care managers; patients should not be seen as co-players in this field.
In this chapter, we will take up the issue of whether the passibility and vulnerability of patients can be weaved in a practices oriented conceptualization of complex care. While our aim is to offer a conceptual contribution to practice theory, our considerations are based on five years of qualitative empirical research (2009-2014) of the first two authors in a general hospital in the Netherlands. As care ethicists, we were (and are) interested in how good care can come about and how it can turn, in an instant, into bad care (see Tronto 1993 and Held 2006 on the philosophical ethics of care and caring). We have shadowed patients waiting for hours in the emergency room; we have witnessed astonishingly good care and unnecessary incriminating acting by one and the same physician on the very same day; we observed the use of high tech and physicians at particular moments relying on more classical experience based diagnostics; we shadowed and interviewed nurses on their rounds distributing medicine while using a computerized safety system, pointing to just one example of the prominent role of materiality in care practices. Complexity became a more and more predominant issue during our observations. Standing explanations from organization theory, interesting as they are, were not satisfying, as suffering of patients or even ‘harm added by care’ (Van Heijst, 2011) were absent in them. If an organization is an arrangement of things, people, ideas or activities (Hatch, 2011) the lack of any telos, and the absence of any conceptualization of the substance of the work, and the experiences that it brings about, render that definition problematic. Such a formal definition of an organization is theoretically weak: that what is done and what is experienced seems irrelevant (cf. Pellegrino, 2001). As Lyotard has analysed there is no such thing as a ‘nil institution’, an organization defined as devoid from content. Thus, the presence of patients constitute the carework in a hospital, they are not just add-ons to an already existing, morally neutral organization. As we were sceptical of theories concentrating on complexity that leave out the substance of care and the normative, we were looking for a theory that could serve us better as a heuristic tool for our research. We needed a theory that could help to dig up matters of concern to those working and being ill in the hospital organization and which is also capable of capturing issues of complexity and normativity. How could caring, suffering and the high complexity of the late modern hospital be adequately theorized? We side with Annemarie Mol (2003) as she emphasizes ‘that what is enacted’ in an organization. However, we do not concentrate, as she does, on the enactment of the body multiple or perhaps disease multiple in various care practices in which health care is leading. Rather, we wanted to understand the very nature of being a patient: the one who is suffering, undergoing both the disease and the care practice. We are interested in the complaints and concerns of patients as they come for assistance and help to doctors, nurses, physiotherapists, nutrition experts, and we are interested in the actions of the care professionals as they take place in the highly complex setting of the hospital too. Any theory that is of heuristic value to our research would
