Declining oral intake towards the end of life: how to talk about it? A qualitative study

Clark, Jean; Raijmakers, Natasja; Allan, Simon; Zuylen, Lia van; Heide, Agnes van der

doi:10.12968/ijpn.2017.23.2.74

Cited by 18 publications

(16 citation statements)

References 22 publications

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“…The sole study within this narrative aimed to consider how healthcare professionals might support family members and address their needs. 36 This was a qualitative thematic analysis of interviews about declining oral intake with 10 experienced palliative-care specialists working in a hospice. It describes professional support for family members delivered through communication between healthcare professionals, patients and family members working within specialist palliative care.…”

Section: Resultsmentioning

confidence: 99%

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

2019

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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.

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Section: Resultsmentioning

confidence: 99%

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

2019

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“…Eight papers reported research that had collected data from doctors, nurses or both regarding the concerns of family members about intervention for diminishing drinking at the end of life (narrative B, professionals) (Critchlow & Bauer-Wu, 2002;Ke, Chiu, Lo & Hu, 2008;van der Riet et al, 2008van der Riet et al, , 2009Good, Sneesby, Higgins & van der Riet, 2011;Chambaere, Loodts, Deliens & Cohen, 2014;Higgins, van der Riet, Sneesby & Good, 2014;Cabañero-Martinez et al, 2016). A single paper focused on supportive care (narrative C) (Clark, Raijmakers, Allan, van Xuylen & van der Heide, 2017).…”

Section: Document Characteristicsmentioning

confidence: 99%

The experiences of family members witnessing the diminishing drinking of a dying relative in hospital: A narrative inquiry

Pettifer

2023

Palliat Med

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Background: The optimal management of diminishing drinking at the end of life is contentious. Clinicians and family members may understand the phenomenon differently and hold divergent priorities regarding care. Family members can be distressed by diminishing drinking and its management, particularly when in a hospital environment. Aim: To explore the experiences of family members when witnessing the diminishing drinking of a dying relative. Design: A narrative inquiry methodology, derived from pragmatism. Setting and participants: Thirteen recently bereaved family members were recruited through the bereavement services of three UK hospitals. Inclusion criteria included having an adult relative who died in hospital of any diagnosis more than 48 hours from admission and who had had noticeable diminishing drinking. Findings: Participants experienced diminishing drinking as an unfolding process that was part of overall decline. They all believed it to be detrimental. Three groups of responses were identified: promoting, accepting and ameliorating. Supportive measures included offering equipment to support drinking, staff being present and communicating about expectations and care management aims. Conclusions: There is potential to improve family members’ experiences through re-conceptualisation of diminishing drinking aligned to their experiences, supporting family members by listening to their experiences with insight and strengthening their agency within the management of their relatives with diminishing drinking.

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“…First association: Food refusal is a natural process in the dying phase [50]. For this reason, we want to link the focus of the physical aspects less with fear and dying.…”

Section: Implications For Practicementioning

confidence: 99%

The associations of palliative care experts regarding food refusal: A cross-sectional study with an open question evaluated by triangulation analysis

et al. 2020

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Introduction Health professionals in oncologic and palliative care settings are often faced with the problem that patients stop eating and drinking. While the causes of food refusal are very different, the result is often malnutrition, which is linked to health comorbidities and a high mortality rate. However, the professionals lack the time and knowledge to clarify the cause for each patient. What associations do health professionals have when faced with food refusal? Objective To investigate the associations that health professionals in oncological and palliative settings have about denied eating behavior Methods A cross-sectional study, starting with an open question focusing professionals' associations regarding food refusal. The results were inductively analyzed, whereby generic categories were developed. Subsequently, the categories were transformed into quantitative data to calculate the relationships between the categories. Results A total of 350 out of 2000 participants completed the survey, resulting in a response rate of 17.5%. Food refusal is primarily associated with physical and ethical aspects and with endof-life. Half of the participants frequently find that patients refuse to eat. The attitudes show that the autonomy of the patient is the highest good and is to be respected. Even in the case of patients with limited decision-making capacity, the refusal to eat is acceptable.

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Declining oral intake towards the end of life: how to talk about it? A qualitative study

Cited by 18 publications

References 22 publications

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

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

The experiences of family members witnessing the diminishing drinking of a dying relative in hospital: A narrative inquiry

The associations of palliative care experts regarding food refusal: A cross-sectional study with an open question evaluated by triangulation analysis

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