Coordinating between worlds in the last phase of life
Author(s): Estella Posthuma
Thursday 15 | 13:40-14:00
Room: TP51
Session: Care and technologies in a digitalised society
Advance care planning (ACP) for clients in the last phase of life, living at home with complex care needs is increasingly seen as a valuable practice to deliver patient centered care. Scholars argue that ACP contributes to the prevention of acute care needs, and with that, the prevention of unnecessary hospitalizations (Dixon et al., 2015). ACP is understood as a process in which patients together with healthcare professionals specify wishes, limits, goals, and preferences for care in the last phase of life.
ACP for clients living at home is notably complicated due to the myriad of interactions between human and non-human actors, such as healthcare professionals, informal caregivers, legal requirements, ethical norms, access to electronic files, and organizational routines in different care domains (Livne, 2019). Hence, ACP is more than just a formal agreement; it is a socio-technically mediated and dynamic process as well as ‘a promise’ for good end of life care.
A notable difficulty in ACP for clients living at home is the vast reduction of complexity of information about wishes and limits of care in the last phase of life and the coordination of care over various domains. Information rich, laden and complex conversations about care between patients and care providers, for instance, are recorded as jottings in electronic patient records. Furthermore, these brief messages are exchanged between care professionals from different disciplinary backgrounds, trained and socialized in different 'social worlds', acting in different healthcare domains and who try to use these agreements and adjust and coordinate the provided care accordingly. Yet, it is unknown how care in the last phase of life is designed and coordinated over various domains on basis of this limited information that moreover has different meanings relating to distinct practices in those different social worlds (e.g. a patient brought in at the emergency room is more likely to be resuscitated than found unconscious at home). In this paper, we ask: “How is ACP coordinated for clients in the last phase of life between and among professionals from different social worlds, and with what consequences for how care is provided?”. The data is gathered through ethnography research in the Netherlands.
We use the concept of 'boundary object' (Star and Griesemer, 1989) and 'social worlds' to analyze the various practices enacted and connected under the umbrella of advance care planning. The research shows how ACP agreements act as a boundary object by intersecting different professional social worlds. ACP agreements circulate in different forms, like letters (e.g; hospital letter addressed to the General Practitioner) and digital notes. We show how ACP agreements shape and reshape how these different worlds organize and construct care in the last phase of life.