Family members’ experiences and needs when witnessing diminishing drinking of a dying relative: a systematic literature review: 10th World Research Congress of the European Association for Palliative Care

Background Family members are frequently concerned and distressed by the ongoing decline of oral fluid intake by dying relatives, particularly in a hospital context. Research has focused on the efficacy of clinically assisted hydration (CAH) to palliate dying patients but meeting the needs of family members witnessing decline in oral fluid intake can also be challenging for healthcare professionals. In the light of this, an adapted meta-narrative review was undertaken addressing the question: How have family members’ experiences and needs when witnessing diminishing drinking of a dying relative been researched and what is known about this? MethodsCINAHL, Medline, PsycINFO, ASSIA and Scopus databases were searched for relevant research published since 1982. Titles and abstracts of retrieved papers were considered against inclusion and exclusion criteria. All study designs and qualities were included. Findings were analysed to identify ways in which the question has been addressed and the knowledge generated as a consequence. ResultsOf the 209 retrieved papers, 22 met the inclusion criteria. No study that focused specifically on family members’ experiences and needs when witnessing the diminishing drinking of dying relative was identified. Instead most research has focused on family members’ perspectives of CAH, professionals’ perspectives of family members’ and dying patients’ needs and clinical decision-making concerning CAH. Most studies have considered drinking in combination with eating or clinically assisted nutrition and within a specialist palliative care context which may not be typical of the experience of family members’ in hospital settings. Where it can be disaggregated, the literature about diminishing drinking suggests family members’ needs vary depending on their views about the significance of drinking, the care environment and their personal preferences. Family members’ perception of their own needs may differ significantly from that of professionals, who focus on the need for improved education and communication about diminishing drinking with family members. ConclusionWhile some understanding of the topic can be inferred from heterogeneous research in related areas, there is paucity specifically about family members’ experiences and needs when diminishing drinking of a dying relative. Further research to explore family members’ experiences and needs first-hand is required to inform the support healthcare professionals can offer them.