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

Christel Hedman*, Carl Johan Fürst, Birgit H. Rasmussen, Agnes van der Heide, Maria E.C. Schelin

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

2 Citations (Scopus)
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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.

Original languageEnglish
Article number16146
JournalInternational Journal of Environmental Research and Public Health
Issue number23
Publication statusPublished - 2 Dec 2022

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Publisher Copyright: © 2022 by the authors.


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