COVID‐19 pandemic: end‐of‐life experience in Australian residential aged care facilities

Abstract

Background The COVID‐19 pandemic has significantly impacted on those in Residential Aged Care Facilities (RACFs). This research was undertaken to explore and better understand the effects of the pandemic on the experience of next‐of‐kin and carers who encountered the death of a loved one who resided within a RACF during the pandemic. Methods Prospective single‐centre mixed methods research was undertaken involving telephone interview with next‐of‐kin or carers of residents who died within 30 days of being referred to Austin Health Residential Inreach Service during the ‘second wave’ of COVID‐19 in Melbourne, Australia in 2020. Qualitative and quantitative data was collected. Qualitative description and aspects of grounded theory was used for analysing qualitative data. Thematic analysis of the interview transcripts used open and axial coding to identify initial themes and then to group these under major themes. Results Forty‐one telephone interviews were analysed. Major themes identified included: COVID‐19 pandemic; communication and technology; death and dying experience; bereavement and grief; and social supports and external systems. Conclusion Findings from this study identify the many COVID‐19 pandemic related challenges faced by participants and their dying loved one in RACFs. Access to palliative care and bereavement support is crucial for dying residents and for grieving that has been made more difficult by the pandemic. This article is protected by copyright. All rights reserved.

Understanding advance care planning in care homes throughout the COVID-19 pandemic: A critical realist review and synthesis

“…34 The reduced face-to-face contact during the pandemic also appeared to take an emotional toll on relatives and surrogates involved in care planning. 30,33,35 Emotions such as denial and shock concerning a loved one's condition (particularly in the case of acute COVID-19 diagnosis) seemed to be triggered by relatives' reduced ability to directly observe changes over time. 30,31 Although synthesis suggests these circumstances can lead to a greater risk of interventional and curative orientated decisions by relatives, 29,30,35 it was found that frequent ongoing involvement of relatives in care planning conversations can help to mitigate these emotions.…”

“…Although face-to-face discussions still occurred between care home staff and residents; relatives and surrogates were often involved in these discussions remotely using video or phone calls due to visiting restrictions. 29,31,33,35,36,38 Several benefits resulted from the adoption of remote communication compared to face-to-face discussions, which included easier and more frequent access to relatives, being able to schedule calls and being able to speak concurrently with more relatives. 29,33 Nonetheless, maintenance of an individual and person-centred approach during care planning discussions appeared to be challenged by remote communication.…”

“…30,32,33 Specifically, several studies noted that lack of regular visits, which would have allowed relatives to monitor residents and notice any deterioration, meant that they depended much more on care home staff in advance care planning discussions. 30,33 Hack et al 35 found that social distancing particularly affected residents living with dementia due to the lack of physical touch and presence, and non-English speaking residents who relied on visiting relatives to act as interpreters.…”

“…However, reflecting stakeholders' responses to the contextual changes wrought by COVID-19, more anticipatory conversations were evident during the pandemic about the use of ventilation, intensive care unit admission as well as resuscitation and hospital usage at the end of life. 29,33,35 For example, Ye et al 38 who studied care preferences amongst 963 residents and surrogate decision makers found that 276 changed their hospitalisation preferences to 'do not hospitalise' following COVID-19 discussion topics. Similarly, Vellani et al 29 report increased frequency of advance care planning discussions during the COVID-19 pandemic in care homes.…”

COVID-19 Impact Analysis on Patients with Complex Health Conditions: A Literature Review

“…Ref. [114] investigated how the COVID-19 pandemic has affected the experiences of next-of-kin and carers who witnessed the death of their loved ones in residential aged care facilities (RACFs). The study revealed that participants and their dying loved ones faced various pandemic-related challenges in RACFs.…”