Patient-centred care (PCC) is widely promoted as a gold standard in contemporary medicine, emphasising autonomy, shared decision-making, and informational transparency. However, its implementation often assumes a level of epistemic symmetry and emotional capacity that may not align with patients’ lived experiences–especially in contexts of terminal illness. This study draws on 31 post-consultation interviews with patients recently diagnosed with pancreatic ductal adenocarcinoma (PDAC) to explore how trust is constructed, experienced, or undermined in clinical communication. Using inductive thematic analysis, we identified five key themes: trust as cumulative and relational; honesty and clarity as affective anchors; empathy and the moral significance of small gestures; the mediating role of companions; and communication as a site of narrative repair. Rather than seeking decisional control or informational primacy, many patients articulated a desire for interpretive guidance, emotional containment, and communicative attunement. These findings challenge normative assumptions about patient empowerment and call for a reconceptualisation of PCC as a practice of epistemic and affective responsiveness. Trust, in this view, is not a background condition of care, but its central infrastructure–fragile, temporal, and co-produced in the intersubjective space of the clinical encounter.
What patients want: Is it really patient-centered care? / Consolandi, M., Floris, M.. - In: SOCIAL EPISTEMOLOGY. - ISSN 1464-5297. - (2026). [10.1080/02691728.2025.2602130]
What patients want: Is it really patient-centered care?
Monica Consolandi
Primo
;Mara FlorisSecondo
2026-01-01
Abstract
Patient-centred care (PCC) is widely promoted as a gold standard in contemporary medicine, emphasising autonomy, shared decision-making, and informational transparency. However, its implementation often assumes a level of epistemic symmetry and emotional capacity that may not align with patients’ lived experiences–especially in contexts of terminal illness. This study draws on 31 post-consultation interviews with patients recently diagnosed with pancreatic ductal adenocarcinoma (PDAC) to explore how trust is constructed, experienced, or undermined in clinical communication. Using inductive thematic analysis, we identified five key themes: trust as cumulative and relational; honesty and clarity as affective anchors; empathy and the moral significance of small gestures; the mediating role of companions; and communication as a site of narrative repair. Rather than seeking decisional control or informational primacy, many patients articulated a desire for interpretive guidance, emotional containment, and communicative attunement. These findings challenge normative assumptions about patient empowerment and call for a reconceptualisation of PCC as a practice of epistemic and affective responsiveness. Trust, in this view, is not a background condition of care, but its central infrastructure–fragile, temporal, and co-produced in the intersubjective space of the clinical encounter.| File | Dimensione | Formato | |
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