Managing understandings of palliative care as more than care immediately before death: Evidence from observational analysis of consultations

Abstract

BackgroundEvidence suggests that public, and some professional, understandings of palliative care are limited to care provided immediately before death, which contrasts palliative care's scope as care provided across a range of illness stages.ObjectiveTo examine how clinicians manage patients' understandings of palliative care during initial consultations.DesignInitial palliative care consultations were video‐recorded and analysed using conversation analytic methods.Setting/ParticipantsConsultations were recorded in a specialist palliative care outpatient unit within an Australian public hospital. Participants included 20 newly referred patients and their families, and three palliative care clinicians.ResultsDuring initial consultations, it was observed that specialist palliative care clinicians frequently managed the possibility that patients may understand palliative care as limited to care provided immediately before death. Clinicians used recurrent practices that seemed designed to pre‐empt and contradict patients' possible narrow understandings. When discussing the palliative care inpatient unit, clinicians recurrently explained inpatient care could include active treatment and referred to the possibility of being discharged. These practices contradict possible understandings that future admission to the inpatient unit would be solely for care immediately before death.DiscussionThe findings demonstrate that palliative care clinicians are aware of possible narrow understandings of their discipline among members of the public. The practices identified show how clinicians pre‐emptively manage these understandings to patients newly referred to palliative care.ConclusionsThese findings highlight scope for greater partnership with teams referring patients to palliative care, to assist patients in understanding the range of reasons for their referral.Patient or Public ContributionThe observational method of conversation analysis provides direct insight into matters that are relevant for patients, as raised in their consultations with clinicians. This direct evidence enables analysis of their lived experience, as it occurs, and grounds analysis in observable details of participants' conduct, rather than interpretations of subjective experiences. The patients' contributions, therefore, were to allow observation into their initial palliative care consultations.