The Experiences of Family Members Witnessing the Diminishing Drinking of a Dying Relative in Hospital: A Narrative Inquiry

Abstract Background Palliative care aims to support the family members of people with life-threatening illnesses, alongside those who are ill. In the United Kingdom (UK), family members have expressed concern about the management of diminishing drinking and its consequences, particularly in the hospital environment, and the area is a priority for research. Aim This research aims to explore the experiences of family members when witnessing the diminishing drinking of a dying relative in order to identify areas in which professional support of family members might be improved. The exploration is framed within key notions of pragmatism as espoused by William James and John Dewey. Methodology and Method Thirteen family members who had witnessed diminishing drinking of a relative dying in hospital were recruited through the hospital bereavement service of one National Health Service trust in the UK. Their experiences were collected and analysed using narrative inquiry methodology, derived by Jean Clandinin and her colleagues from pragmatism.   Findings Participants experienced diminishing drinking as an unfolding process which was part of overall decline associated with advancing illness. They all believed it to be detrimental. Three groups of responses were identified: promoting, accepting and ameliorating. Participants reported positive experiences of healthcare when staff actively supported relatives to drink, but they also found that staff could sometimes be too busy to attend to drinking. Tension occurred within families, and between healthcare staff and families over different approaches to managing aspiration risk and clinically assisted hydration. Conclusion This thesis offers a unique understanding of family members’ experiences of diminishing drinking, which has the potential to inform new palliative endeavour in the field. It argues for a re-conceptualisation of diminishing drinking aligned to family members’ experiences; for supporting family members through listening to their experiences with insight, and for supporting their agency within the management of their relatives with diminishing drinking. The thesis also offers an exemplar of how palliative care might be framed and executed through a pragmatic lens, enabling appraisal of its value to wider palliative research

The experiences of family members witnessing the diminishing drinking of a dying relative:An adapted meta-narrative literature review

Background: Addressing the concerns of family members is an important aspect of palliative and end-of-life care. One aspect that commonly causes family caregivers concern is the decline of patients’ oral fluid intake in the last few days of life.  Aim: To map the narratives in which family members’ experiences of witnessing the diminishing drinking of a dying relative have been researched, review the findings within each narrative and consider directions for future research.  Design: An adapted meta-narrative review approach.  Data Sources: The Cumulative Index of Nursing and Applied Health Literature, Medline, PsycINFO, Psycharticles and Scopus databases were searched for relevant research published between January 1982 and December 2017. Quality was assessed using the Quality Assessment and Review Instrument.  Results: A total of 22 papers met the inclusion criteria. No study focused specifically on the experiences of family members when witnessing the diminishing drinking of dying relatives. However, research about diminishing drinking was identified within studies broadly focusing on cancer cachexia, clinical decision-making about hydration and/or nutrition and support in a hospice context. The research indicates that family members’ experiences of diminishing drinking vary with their views about the significance of drinking, dying well and their expectations of themselves and healthcare professionals.  Conclusion: While some understanding of the topic can be inferred from research in related areas, there is a paucity of information specifically about family members’ experiences when witnessing the diminishing drinking of a dying relative