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 and Maria E. C. Schelin
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Christel Hedman: Department of Molecular Medicine and Surgery, Karolinska Institutet, Anna Steckséns gata 53, SE-17176 Stockholm, Sweden
Carl Johan Fürst: Department of Clinical Sciences Lund, Lund University, BMC, Sölvegatan 19, SE-22362 Lund, Sweden
Birgit H. Rasmussen: Institute for Palliative Care, Lund University and Region Skåne, Scheelevägen 2, Medicon Village, SE-22381 Lund, Sweden
Agnes van der Heide: Institute for Palliative Care, Lund University and Region Skåne, Scheelevägen 2, Medicon Village, SE-22381 Lund, Sweden
Maria E. C. Schelin: Department of Clinical Sciences Lund, Lund University, BMC, Sölvegatan 19, SE-22362 Lund, Sweden

IJERPH, 2022, vol. 19, issue 23, 1-13

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.

Keywords: COVID-19; relatives; palliative care; end-of-life; quality of care; symptoms (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2022
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