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Axis 2 | Space and time of care
Keywords: architecture, design, experience
Healthcare is organized into closed spaces. From the hospital bedroom to the hospital itself and on to the geographical distribution of healthcare establishments, considered also from the perspective of cross-cultural comparison, architecture reminds us that the spatialization of the place of care informs the care itself. A welcome is not in itself sufficient for care; a space must be organized to that end. We know this from the reconfiguration of the general hospitals (hotels Dieu) at the end of the 18th century. But what imaginaries underpin hospital spaces today? The values of care receive their material translation in the conception of space. It is thus important to examine whether and how the conception of space produces, supports, or short-circuits an ethics of the care relation. How can the architectural construction of a place of care support its psychic construction and how can the values of the care relation find their concrete realization in the space that welcomes them? And, by extension, how can these values of care be transposed into the intimate sphere of the home, which is increasingly a place of care?
In the French context, care is concentrated in the space of the hospital, which perceives relational time as not useful to the organization. The hospital institution is in effect subordinated to bureaucratic injunctions. A place of tension, it must reconcile imperative of different orders: economic (reduction of expense and optimization of procedures), social (saturation of emergency services), cultural (the hospital is a space where a diversity of cultural representations around morbidity and health are concentrated), professional (each profession defends its interests, doctors, nurses, transporters, etc.). One also finds ethical imperatives: which times, which practices, which contexts favour ethical reflexion at the hospital? What methods are used in ethical committees to address situations which concern the lives of the patients and the responsibility of the carers? Over the last few years, ethical rules that frame hospital research restrict the possibilities of social science inquiries compared to 20 or 30 years ago. This is the reason why, despite the pre-eminence of the hospital in France, our research will also explore spaces propitious to innovation, understood as a form of incisive marginality rather than as an application of the classical principles of management. Networks and associations seem to us to present both the structure and the size necessary for this objective.
The communal places of care could also be rethought. The corridors, the bedrooms, the meeting space are not only the territories of healthcare professionals, but first of all those of persons considered ill and whom one calls, in a transitory and localized manner, “patients”. Are not the doctors, even when in “their” service, not also in the territory of the ill? The latest report of the Ministry of Health on the new organization and architecture of hospitals concludes by asking: “can the dream still find a space in the complexity of the hospital?” What imaginaries underpin the spaces and the times of care, from the home to the hospital bedroom, passing by the journey that links one to the other? At the scale of the city, of the department, or even of the region, the same reasoning may also be undertaken. To start from a specific area, taking into account the movements of the ill person, is to challenge the primacy of the interests of professionals in the organization of care. Certain chronic diseases, like kidney failure, are particularly constraining from a spatio-temporal point of view. The periodicity of dialyses or the wait for a transplant attach the person to a specific area, which impacts on life conditions beyond that of the medical condition.
Taking account of space and time encourages us to envisage the experience of the person in and around care, beyond the context of “patient-reported outcomes” which are always formulated in a manner informed by the institution. Canadian and British researchers have proposed to move from “patient-centred” to “user-led”. To “evidence-based medicine” one would thus add “experience-based design” (EBD). With EBD, patients are not limited to giving their view in the context of focus groups. They are members of the team charged with reorganizing the services and the paths of care. For the promoters of EBD, it is a way of operationalizing knowledge acquired by narrative medicine. The authors start from the principle that the process may be efficient, the treatment effective, but the experience of the patient negative. That which is also called experience-based co-design (EBCD) is conceived as a participative research-action capable of re-motivating care teams, an essential condition for improving the experience of the patient and the quality of care. Design based on experience is thus rooted in considerations that are both ethical and organizational.
In the French context, care is concentrated in the space of the hospital, which perceives relational time as not useful to the organization. The hospital institution is in effect subordinated to bureaucratic injunctions. A place of tension, it must reconcile imperative of different orders: economic (reduction of expense and optimization of procedures), social (saturation of emergency services), cultural (the hospital is a space where a diversity of cultural representations around morbidity and health are concentrated), professional (each profession defends its interests, doctors, nurses, transporters, etc.). One also finds ethical imperatives: which times, which practices, which contexts favour ethical reflexion at the hospital? What methods are used in ethical committees to address situations which concern the lives of the patients and the responsibility of the carers? Over the last few years, ethical rules that frame hospital research restrict the possibilities of social science inquiries compared to 20 or 30 years ago. This is the reason why, despite the pre-eminence of the hospital in France, our research will also explore spaces propitious to innovation, understood as a form of incisive marginality rather than as an application of the classical principles of management. Networks and associations seem to us to present both the structure and the size necessary for this objective.
The communal places of care could also be rethought. The corridors, the bedrooms, the meeting space are not only the territories of healthcare professionals, but first of all those of persons considered ill and whom one calls, in a transitory and localized manner, “patients”. Are not the doctors, even when in “their” service, not also in the territory of the ill? The latest report of the Ministry of Health on the new organization and architecture of hospitals concludes by asking: “can the dream still find a space in the complexity of the hospital?” What imaginaries underpin the spaces and the times of care, from the home to the hospital bedroom, passing by the journey that links one to the other? At the scale of the city, of the department, or even of the region, the same reasoning may also be undertaken. To start from a specific area, taking into account the movements of the ill person, is to challenge the primacy of the interests of professionals in the organization of care. Certain chronic diseases, like kidney failure, are particularly constraining from a spatio-temporal point of view. The periodicity of dialyses or the wait for a transplant attach the person to a specific area, which impacts on life conditions beyond that of the medical condition.
Taking account of space and time encourages us to envisage the experience of the person in and around care, beyond the context of “patient-reported outcomes” which are always formulated in a manner informed by the institution. Canadian and British researchers have proposed to move from “patient-centred” to “user-led”. To “evidence-based medicine” one would thus add “experience-based design” (EBD). With EBD, patients are not limited to giving their view in the context of focus groups. They are members of the team charged with reorganizing the services and the paths of care. For the promoters of EBD, it is a way of operationalizing knowledge acquired by narrative medicine. The authors start from the principle that the process may be efficient, the treatment effective, but the experience of the patient negative. That which is also called experience-based co-design (EBCD) is conceived as a participative research-action capable of re-motivating care teams, an essential condition for improving the experience of the patient and the quality of care. Design based on experience is thus rooted in considerations that are both ethical and organizational.
Further reading
- Didier VINOT, Elisa CHELLE, Jean RIONDET, « La valeur de la coordination adaptative dans le maintien à domicile des personnes âgées dépendantes », Gérer et comprendre, n° 134, 2018, p. 37-47.
- Catherine DEKEUWER, Brenda BOGAERT, Nadja EGGERT, Claire HARPET, Morgane ROMERO, « Falling on deaf ears. A qualitative study on Clinical Ethical Committees in France », Medecine, Health Care and Philosophy, 22(4), 515-529, 2019.