Negotiating uncertain terrain: a qualitative analysis of clinicians' experiences of refractory suffering

In palliative care, the witnessing of unrelieved (refractory) suffering takes its toll on all concerned; however, the effect on experienced palliative clinicians of witnessing such suffering has largely been unexplored. The aim of this study was to examine health care professionals' (nurses, doctors, and allied health workers) experiences of working with a patient's refractory suffering, together with their clinical management strategies. A qualitative research design involving semistructured interviews and an online questionnaire was used to collect the data. Seventeen experienced palliative care clinicians participated; 13 with face-to-face interviews and a further 4 by an online questionnaire. The overarching theme of negotiating uncertain terrain was common across all clinician narratives. In order for them to work successfully with a patient's refractory suffering, the clinicians had to negotiate areas of practice characterized by uncertainty, with no clear directions and with few expert guides. In reviewing their experiences, they identified within an overarching theme of negotiating uncertain terrain four subthemes: Changing Approach from "Fixing" to "Being With," Maintaining Perspective, Negotiating and Maintaining Boundaries, and Living the Paradoxes. This study highlights that dealing with patients' refractory suffering involves clinicians moving into uncertain and unexplored territory. For them to work effectively in this terrain the clinicians need wisdom, courage, and a commitment to journeying alongside the suffering person.