Dying during the COVID-19 Pandemic in Sweden: Relatives’ Experiences of End-of-Life Care (the CO-LIVE Study)

Abstract

Background: The COVID-19 pandemic has seen many deaths, but the majority were for causes other than COVID-19. However, end-of-life care in all settings has been affected by measures limiting the spread of the virus, for patients with and without COVID-19. The Swedish coronavirus strategy was different compared to many other countries, which might have affected end-of-life care. The aim was to describe the experiences of end-of-life care for bereaved relatives in Sweden during the “first wave” and to compare the experiences for deaths due to COVID-19 with the experiences for deaths for other reasons. Methods: A random sample of addresses for 2400 people who died during March–September 2020 was retrieved from the Swedish Person Address Registry. Relatives were contacted with a questionnaire regarding their experience of end-of-life care, with a focus on communication, participation, and trust. Results: In total, 587 relatives (25% response rate) answered the questionnaire (14% COVID-19-deaths, 65% non-COVID-19-deaths, 21% uncertain). In the COVID-19 group 28% of the relatives were allowed visits without restrictions compared to 60% in the non-COVID-19 group (p < 0.01). Only 28% of the relatives in the COVID-19 group reported that the person received “enough care from physicians”, significantly fewer than the non-COVID group (65%, p < 0.01). Conclusion: Relatives’ experience of end-of-life care for persons with COVID-19 was significantly worse than relatives of persons without COVID-19, but relatives for persons without COVID-19 were also negatively affected.

Associations between the spread of COVID-19 and end-of-life circumstances in the non-infected population of Sweden

“…A greater proportion of individuals dying alone during the COVID-19 pandemic has also been reported by others [6,21] and might be a result of measures a Significant difference between individuals with and without COVID-19, p<0.01.…”

“…A greater proportion of individuals dying alone during the COVID-19 pandemic has also been reported by others [6,21] and might be a result of measures adopted in response to viral spread, such as visiting restrictions at healthcare facilities and self-imposed social restrictions. Every individual’s dying experience is unique and numerous factors come into play that influence the likelihood of a ‘good death’ [22] .…”

Topic Modelling of Swedish Newspaper Articles about Coronavirus: a Case Study using Latent Dirichlet Allocation Method

“…During the Coronavirus (COVID-19) pandemic 1 , when the majority of the countries imposed strict lockdowns, the Swedish government instead adopted a relatively different and even controversial approach towards Coronavirus compared to other countries especially during the "first wave" such as keeping many sectors open in society (Creutz et al, 2021;Hedman et al, 2022;Kubai, 2022). 2 There have been some studies on the impact of the Swedish COVID-19 policy such as the effect on overall infection rates, death rates, and the vulnerability towards older people (Pashakhanlou, 2022), on the criticism and argument about lack of scientific guidance from the government (Brusselaers et al, 2022), on the potential influence towards other kinds of disease on nation and region levels (Saarentausta et al, 2022), and on the spread level among different personnel, e.g.…”