“It´s incredible how much I´ve had to fight.” Negotiating medical uncertainty in clinical encounters

Abstract

Purpose: Clinical encounters related to medically unexplained physical symptoms (MUPS) are associated with high levels of conflict between patients and doctors. Collaborative difficulties are fused by the medical uncertainty that dominates these consultations. The main aim of this study is to explore the interactional dynamics of clinical encounters riddled by medical uncertainty, as experienced by people living with long-term medically unexplained fatigue in Norway. Method: A qualitative thematic analysis of written texts from 256 study participants. Results: We found that patients experience being met with disbelief, inappropriate psychological explanations, marginalisation of experiences, disrespectful treatment, lack of physical examination and damaging health advice. The main source of their discontent is not the lack of biomedical knowledge, but doctors who fail to communicate acknowledgement of patients’ experiences, knowledge and autonomy. War metaphors are emblematic of how participants describe their medical encounters. The overarching storyline depicts experiences of being caught in a power struggle with doctors and health systems, fused by a lack of common conceptual ground. Conclusion: When physical symptoms cannot be detected, explained and managed by biomedical knowledge and technology, good doctor-patient partnerships are crucial. Without clearly acknowledging patients’ perspectives and capabilities in clinical practice, such partnerships cannot be achieved.