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Background: During the COVID-19 outbreak restricting measures may have affected the provision of good end-of-life care for patients with and without COVID-19. Aim: To describe characteristics of patients who died and the care they received, and to examine how patient characteristics, setting and visiting restrictions are related to provided care and evaluation of the dying process. Design: An open observational online survey among healthcare professionals about their experience of end-of-life care that was provided to a patient with or without COVID-19 who died between March and July 2020. Setting/participants: Healthcare professionals (nurses, physicians and others) in the Netherlands from all settings: home ( n = 163), hospital ( n = 249), nursing home ( n = 192), hospice ( n = 89) or elsewhere ( n = 68). Results: Of patients reported on, 56% had COVID-19. Among these patients, 358 (84.4%) also had a serious chronic illness. Having COVID-19 was negatively, and having a serious chronic illness was positively associated with healthcare staff’s favourable appreciation of end-of-life care. Often there had been visiting restrictions in the last 2 days of life (75.8%). This was negatively associated with appreciation of care at the end of life and the dying process. Finally, care at the end of life was less favourably appreciated in hospitals and especially nursing homes, and more favourably in home settings and especially hospices. Conclusions: Our study suggests that end-of-life care during the COVID-19 pandemic may be further optimised, especially in nursing homes and hospitals. Allowing at least some level of visits of relatives seems a key component.
Background: The COVID-19 pandemic and restricting measures have affected end-of-life care across different settings. Aim: To compare experiences of bereaved relatives with end-of-life care for a family member or friend who died at home, in a hospital, nursing home or hospice during the pandemic. Design: An open observational online survey was developed and disseminated via social media and public fora (March–July 2020). Data were analyzed using descriptive statistics and logistic regression analyses. Participants: Individuals who lost a family member or friend in the Netherlands during the COVID-19 pandemic. Results: The questionnaire was filled out by 393 bereaved relatives who lost a family member or friend at home ( n = 68), in a hospital ( n = 114), nursing home ( n = 176) or hospice ( n = 35). Bereaved relatives of patients who died in a hospital most often evaluated medical care (79%) as sufficient, whereas medical care (54.5%) was least often evaluated as sufficient in nursing homes. Emotional support for relatives was most often evaluated as sufficient at home (67.7%) and least often in nursing homes (40.3%). Sufficient emotional support for relatives was associated with a higher likelihood to rate the place of death as appropriate. Bereaved relatives of patients who died at a place other than home and whose care was restricted due to COVID-19 were less likely to evaluate the place of death as appropriate. Conclusion: End-of-life care during the COVID-19 pandemic was evaluated least favourably in nursing homes. The quality of emotional support for relatives and whether care was restricted or not were important for assessing the place of death as appropriate.
ObjectivesThe objective of this study is to better understand how the COVID-19 outbreak impacted the different domains of the palliative care approach to end-of-life care from the perspective of healthcare professionals (HCPs) from different professions, working in different settings during the first months of the COVID-19 outbreak in the Netherlands.MethodsAn in-depth qualitative interview study among 16 HCPs of patients who died between March and July 2020 in different healthcare settings in the Netherlands. The HCPs were recruited through an online survey about end-of-life care. Maximum variation sampling was used. Data were analysed following the principles of thematic analysis.ResultsSeveral aspects impacted the quality of the palliative care approach to care at the end of life. First, COVID-19 was a new disease and this led to challenges in the physical domain of end-of-life care, for example, a lack of knowledge on how to manage symptoms and an unreliable clinical view. Second, the high workload HCPs experienced impacted the quality of end-of-life care, especially in the emotional, social and spiritual domains, since they only had time for urgent, physical care. Third, COVID-19 is a contagious disease and measures taken to prevent the spread of the virus hampered care for both patients and relatives. For example, because of the visiting restrictions, HCPs were not able to provide emotional support to relatives. Finally, the COVID-19 outbreak also had a potentially positive impact in the longer term, for example, more awareness of advance care planning and the importance of end-of-life care that includes all the domains.ConclusionThe palliative care approach, which is key to good end-of-life care, was often negatively influenced by the COVID-19 pandemic, predominantly in the emotional, social and spiritual domains. This was related to a focus on essential physical care and prevention of the spread of COVID-19.
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