key: cord-0710193-vmsj7myz authors: Hack, Emma; Hayes, Barbara; Radcliffe, Nicholas; Monda, Sally; Yates, Paul title: COVID‐19 Pandemic: End of Life Experience in Australian Residential Aged Care Facilities date: 2021-11-16 journal: Intern Med J DOI: 10.1111/imj.15628 sha: 3944caa9499172e91f208e1e86d911b322720b66 doc_id: 710193 cord_uid: vmsj7myz 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. Participants were next-of-kin or carer for residents referred to Residential InReach (RIR) between June 1 st and August 31 st 2020, and who died within 30 days of referral. RIR is a Department of Health Victoria program that offers an alternative to Emergency Department transfer by providing timely specialist medical support (including geriatrics and palliative care) to residents in RACFs 27 . Purposive sampling was used to recruit a sample of 40 participants, anticipating this would provide a wide range of experiences and achieve saturation of themes. Next-of-kin/carer was identified from RACF records as the primary contact person (PCP) for the resident. PCP was excluded from invitation to interview if there was an inability to establish contact, lack of conversational English or inappropriateness to engage (e.g. little/no RIR involvement). PCP were contacted consecutively based on the known date of death. Initial telephone contact to introduce the study was made approximately two weeks after resident death, and verbal consent obtained to continue the contact and to send written information and a consent form via email or mail. Telephone interviews took place 6-8 weeks after death using a combination of structured and semi-structured questions (Appendix A). Interviews were conducted by EH and with permission all were audio-recorded. Participants were advised that the research did not provide formal psychological support and to seek help through their GP for referral to appropriate services if required. Those identified with potential need for further support were provided with grief and bereavement information and services (Appendix B). Mixed methods analysis was conducted. Qualitative description 28 and aspects of grounded theory 29 were used to explore the experiences reported in interviews. Transcription of the interviews was verbatim with removal of identifying information. Transcripts were then analysed using NVivo 12 software, identifying individual themes (open coding) and subsequently arranging these into related groups (axial coding). EH, BH and PY independently reviewed samples of transcripts to ensure consistency in identified themes and discussed findings to reach a consensus on final themes. Quantitative data including COVID-19 status and aspects of management were sourced from RACF and hospital records and reported using descriptive statistics. Ethics approval was obtained from Austin Health Human Research Ethics Committee (Approval COVID/13). RIR received 502 referrals between June 1 st and August 31 st 2020 across 53 RACFs, of which 110 residents died within 30 days (Table 1) . Recruitment and details of the 41 participants interviewed are illustrated ( Figure 1 , Table 2 ). Interviews ranged between 18 and 54 minutes (median 37.25 minutes). Community COVID-19 case numbers and restrictions during this period illustrate the research context, which includes Victoria's 'second wave' (Figure 2 ). Five major themes were identified: (1) COVID-19 pandemic; (2) Communication and Technology; (3) Death and Dying; (4) Bereavement and Grief; and (5) Social Supports and External Systems. Comparable themes were described for both residents with and without COVID-19. Participants described a wide range of emotional responses including shock on learning of RACF The investigator provided five participants bereavement and grief support information (Appendix B) as they were particularly distressed or were seeking direction to services. Others had already sought formal psychological support. The act of taking part in the study meant participants were heard, which many found salutary. Some cried during discussions, though these and other participants expressed gratitude at taking part in the project: 'Thank you for the opportunity to be involved, that in itself is therapeutic' (participant 36) RIR and CPC were well-received. Residents who were referred to CPC received follow-up contact after death, but this applied to less than half of participants: 'They did ring to see how I was going which was nice… I did receive a letter from them as well' (participant 31) Those not referred to CPC did not receive any formal follow-up support, with some feeling disregarded. Many did not know how to seek bereavement support. Most funerals were limited to 10 attendees. Most reported these restrictions as distressing. Some participants found the smaller service a positive experience. Social distancing and masks at the service blunted the ability to perceive and express emotion: 'Sometimes you just need that physical touch' (participant 41) It was reported some people did not attend funerals due to fear while others delayed the event, planning for a memorial at a time when restrictions were relaxed. Most funerals for those of Catholic religion were unable to have Offertory or Holy Communion. At least one resident was unable to receive the Last Rites before death. One participant whose family were Afghan immigrants of Muslim religion arranged a funeral one day after death to avoid looming attendance restrictions, but in keeping with Islamic tradition for a quick burial post-death. Another participant whose family were Greek Orthodox were unable to have an open casket as was customary: Live streaming of funerals was widely utilized. Most reported this as effective though some reported technical difficulties. Those who declined live streaming felt it was impersonal, that others would struggle to access the technology or that it was too expensive. Expressions of anxiety and disempowerment were common. Some were working from home whilst assisting their children undertake remote learning. There were multiple challenges to wellbeing including loss of social support networks and community, travel and leisure activities: 'A lot has been taken out of our hands' (participant 41) Technology and internet access was key to maintaining contact. Regular contact with family and friends appeared to confer more positive coping. Some had lost employment and were reliant on government welfare. Financial hardship and legal difficulties were encountered. Some felt let-down by the government and events unfolding with many expressing expectation of a more prepared and effective response: Findings identify the personal cost of both the pandemic and visiting restrictions on residents and their broader supports and families. It is important when planning for pandemics that these individual burdens are fully considered when making plans aimed at the greater good of the community. The critical caring role of many next-of-kin and carers needs recognition, and if not permitted, will need to be compensated for by increased staffing during a pandemic, recognizing that this is not equivalent to visits from a loved one. Since the conclusion of the study, metropolitan Melbourne has exited 'lockdown' and re- World Health Organization Regional Office for Europe. WHO announces COVID-19 a pandemic [Internet]. World Health Organization Grief: The Epidemic Within an Epidemic. American Journal of Hospice and Palliative Care Medicine Australian Government: Department of Health. COVID-19 cases in aged care servicesresidential care COVID-19 pandemic: palliative care for elderly and frail patients at home and in residential and nursing homes Ending the second wave: How did Victoria get to zero active cases? Unmet needs: COVID-19 and the 'wandering' patient. MJA InSight Complicated grief after bereavement Health outcomes of bereavement Prolonged grief disorder following the Coronavirus (COVID-19) pandemic The Stressful Caregiving Adult Reactions to Experiences of Dying [SCARED] scale: a measure for assessing caregiver exposure to distress in terminal care DO education and income buffer the effects of death of spouse on mortality? Epidemiology The Economic Cost of Bereavement in Scotland Update on bereavement research: evidence-based guidelines for the diagnosis and treatment of complicated bereavement Heightened Mental Distress: Can Addressing Financial Stress Help? [Internet]. The University of Melbourne Prevalence of Depression Symptoms in US Adults Before and During the COVID-19 Pandemic Considering Grief in Mental Health Outcomes of COVID-19 Psychological Trauma: Theory, Research, Practice and Policy Grief and the COVID-19 pandemic in older adults How do Funeral Practices Impact Bereaved Relatives' Mental Health, Grief and Bereavement? A Mixed Methods Review with Implications for COVID-19 The widowers' bereavement process and death rituals: Hong Kong experiences. Illness, Crisis, & Loss Facilitating grief: An exploration of the function of funerals and rituals in relation to grief reactions The experience of Chinese bereaved persons: A preliminary study of meaning making and continuing bonds The effect of suppressing funeral rituals during the COVID-19 pandemic on bereaved families A qualitative study of bereaved relatives' end of life experiences during the COVID-19 pandemic Death and Mourning amid COVID-19 Pandemic in Kashmir: A Qualitative Study Bereavement support on the frontline of COVID-19: Recommendations for hospital clinicians Integration of Inpatient and Residential Care In-Reach Service Model and Hospital Resource Utilization: A Retrospective Audit Focus on Research Methods: Whatever Happened to Qualitative Description? Research in Nursing & Health Grounded Theory Research: Procedures, Canons, and Evaluative Criteria Digital technology using during COVID-19 pandemic: A rapid review Bereaved Families' Perceptions Of End-of-Life Communication During COVID-19 Supporting families in end-of-life care and bereavement in the COVID-19 era Supporting people bereaved during COVID-19: a mixed methods study of bereaved people's experiences and the bereavement services supporting them Managing bereavement when a family member dies in an aged care home: the impact of COVID-19 Where do people die? An international comparison of the percentage of deaths occurring in hospital and residential aged care settings in 45 populations, using published and available statistics A good death but there was all this tension around"-perspectives of residential managers on the experience of delivering end of life care for people living with dementia The Economic Benefits of Palliative Care and End-of-Life Care in Residential Aged Care Centre for Humanitarian Leadership: Working Paper 002. Palliative Care in Humanitarian Crises Supporting Adults Bereaved Through COVID-19: A Rapid Review of the Impact of Previous Pandemics on Grief and Bereavement The Role and Response of Palliative Care and Hospice Services in Epidemics and Pandemics: A Rapid Review to Inform Practice During the COVID-19 Pandemic Caring for Bereaved Family Members During the COVID-19 Pandemic: Before and After the Death of a Patient Australian Government: Fair Work Ombudsman. Compassionate and bereavement leave [Internet]. The Fair Work Ombudsman and Registered Organisations Commission Entity