Who am I to take hope away? - A qualitative study of clinicians' experiences with patient and family enquiries about unproven therapies.

Abstract

To inform design and implementation of communication strategies, this study investigated clinicians' experiences with patient and family enquiries about unproven therapies, across different health conditions and healthcare settings. This qualitative study, informed by a descriptive and phenomenological approach, collected data from nine focus groups, comprised of Australian clinicians (n = 58) who work together in teams from different health settings with shared experiences of patient and family enquiries about unproven therapies. Focus groups ran for 60-90 min, online (n = 6) and in person (n = 3). Clinicians report enquiries about unproven therapies are frequent, varied and mostly initiated by patients and families, triggered by media coverage or information found online or through peers. While unique features of a patient's health condition and a health setting provide helpful context to enquiries, thematic analysis identified five shared experiences across different teams: i) finding the balance between hope and the facts, ii) navigating the 'grey areas' of health and medicine, iii) working within professional boundaries, iv) managing multiple 'voices' in the room, and v) contending with external provider marketing and funding models. This study provides a previously unidentified lens to shared experiences with patient and family enquiries about unproven therapies. Enquiries are frequent and varied, however, there is some hesitancy from clinicians, patients and families to initiate the discussion. Findings highlight key issues that can inform initiatives to address these complex situations. Study findings suggest a need to work towards a proactive communication approach and designing a strategy to equip clinicians with tools to initiate and facilitate the conversation about unproven therapies that is sensitive to the experience of different health conditions. Quarantining time to reflect on cases and encounters is encouraged.