Managing End-of-Life Information in Palliative Care: Between Discord and Conceptual Blends

Managing End-of-Life Information in Palliative Care: Between Discord and Conceptual Blends

Alexandre Cotovio Martins (Polytechnic Institute of Portalegre, Portugal)
DOI: 10.4018/978-1-5225-8470-4.ch007

Abstract

In this chapter, the author develop a sociological analysis of the role played by professional management of information about patients' end-of-life (EoL) processes in palliative care (PC). Thus the author will thus highlight the processes by which PC professionals manage private health information about patients in the frame of this type of care. Thus the author will show how managing information about prospective EoL trajectories by healthcare professionals is one of the major challenges in their daily work in PC wards. The author verifies that, in these contexts, patients and their families and members of the healthcare teams tend to have different experiential and personal careers in their relation with disease, the organization of care, and EoL trajectories, whose confrontation at the level of interaction produces complex effects in social processes that occur in daily activity contexts of PC.
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Background: The Body As A Material Anchor For Cognitive Processes

In this Chapter, the author develops an exploratory analysis of the role played by distributed cognitive processes in palliative care, namely in the frame of specifically social problem-solving work developed by palliative care professionals. Palliative care is a specific form of healthcare, dedicated to promote comfort and quality of life for patients in advanced or terminal phase of chronic illness. In this type of care, the intervention of professionals needs to address frames of action which typically involve the private sphere of patients and their families. In these frames, one of the major elements which compose a significant part of the private sphere of patients is their body, namely the parts of it usually covered and protected from public scrutiny. Unveiling a part of what happens in this kind of frame is the purpose of this text.

In our analysis, we use the concept of material anchor, built by distributed cognition scientist Edwin Hutchins (2005), which allows to analyze and give centrality to the body of the patient as a particular material structure. Social actors in palliative care use this material anchors in the coordination of their actions, namely by coordinating internal (cognitive) structures with external (the body of the patient) structures. Material anchors play a relevant role in reasoning – or, in other words, in cognitive processes -, namely when social actors are in a situation which might not be easily apprehended through known cultural models, as it is frequently the case with patients and their families in end-of-life settings. In these cases, the blending of cognitive and material structures to stabilize reasoning emerges as a very relevant type of cognitive process. As Edwin Hutchins states,

The stability of (…) complex conceptual models is sometimes provided by their being embedded in conventional (culturally shared) well-learned and automatically applied internal mental structure. A conceptual model with these properties is a cultural model. (…). Other conceptual models achieve stability by virtue of being blended with an external physical medium. Problems that are too complex to hold in mind as a cultural model, and possibly some that are too complex to express at all in internal conceptual models, can be expressed and manipulated in material structure (Hutchins, 2005, pp. 1573-1574).

Key Terms in this Chapter

Palliative Care: Healthcare provided to chronic, seriously ill and terminal patients, usually intending to promote comfort and quality of life in a context in which curing the patient isn’t possible.

Critical Moments: Situations where discord between relevant actors arises in view of elements of uncertainty present in different palliative care occurrences.

Cognitive Blending in Palliative Care: Process of binding general forms of medical representation of the ill body with local, particular references to that same body.

Medically Defined Dying (or End-of-Life) Trajectories: The objective transformations of the sick body over time as grasped through medical teams, when mobilizing medical knowledge.

Hospital Careers of Illness: The objective trajectories of patients and their families over time in hospital facilities (for instance, the transition between wards or services), which are related to the subjective experience of these trajectories, also developed over time.

Dying Trajectories: The objective transformations of the sick body over time and the subjective views that different (namely patients and their families, but also health professionals) social actors build upon them, in end-of-life situations.

Conceptual Blend: A cognitive strategy which encompasses combining mental processes with material objects that can support cognition in complex, unstable situations.

Career: Personal and experiential trajectories of relation with healthcare services and professionals, illness and disease, death and other situations and conditions, developed over time by individuals.

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