What Should We Aim for when Addressing Uncertainty from Serious Illness? A Stakeholder Focus Group Study.

Abstract

Uncertainty is ubiquitous in serious illness. It defines experiences of diagnosis, current illness, and future prognosis and is experienced across physical, psychological, and temporal domains. Uncertainty impacts patients, carers, healthcare professionals and health systems; it cannot be eliminated, but it remains unclear how best to address it. We aimed to identify core goals and approaches when addressing irreducible uncertainty in serious illness to inform the development and implementation of effective interventions. We aimed to answer the question, "What should individual clinicians do to deliver 'good care' for patients experiencing irreducible uncertainty associated with serious illness?" One-day rapid consensus workshop held in the United Kingdom, during which five mixed focus groups of 6-8 participants discussed uncertainty in serious illness and the goals of addressing it. Thirty-four participants, including 21 health and social care professionals, 8 researchers, 3 policymakers, and 3 patient representatives. Several participants held multiple roles. Age range 33-61 (median 47), 20 (67%) female. Focus group transcripts were analysed inductively using reflexive thematic analysis to generate a thematic model. Analysis identified the overarching purpose of addressing uncertainty as "Finding security in uncertainty together," comprising four key domains of: (1) relationships and trust across the care team; (2) personalisation of uncertainty management to an individual's need and clinical context; (3) reframing uncertainty as normal and tolerable; and (4) moving forward together through shared decision-making and parallel planning. This study has generated a new model to approach uncertainty in serious illness. These findings suggest shifting the focus from the patient alone as an individual to strengthening relationality across the care team. Our findings emphasise the need to psychologically reframe living with uncertainty as a core goal, and to negotiate and align the needs of patients, carers, and clinicians when sharing uncertainty.