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

Hedman, Christel LU ; Fürst, Carl Johan LU ; Rasmussen, Birgit H LU ; van der Heide, Agnes LU and Schelin, Maria E C LU (2022) In International Journal of Environmental Research and Public Health 19(23).
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... (More)

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.

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author
; ; ; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Humans, Pandemics, Family, COVID-19/epidemiology, Terminal Care, Hospice Care, Sweden/epidemiology
in
International Journal of Environmental Research and Public Health
volume
19
issue
23
article number
16146
publisher
MDPI AG
external identifiers
  • pmid:36498221
  • scopus:85143732277
ISSN
1660-4601
DOI
10.3390/ijerph192316146
language
English
LU publication?
yes
id
5519e175-9895-4c87-95f3-c46ee5d54a09
date added to LUP
2023-01-23 09:04:53
date last changed
2024-06-12 23:38:39
@article{5519e175-9895-4c87-95f3-c46ee5d54a09,
  abstract     = {{<p>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.</p><p>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.</p><p>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 (<br>
 p &amp;lt; 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%, <br>
 p &amp;lt; 0.01).<br>
 </p><p>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.</p>}},
  author       = {{Hedman, Christel and Fürst, Carl Johan and Rasmussen, Birgit H and van der Heide, Agnes and Schelin, Maria E C}},
  issn         = {{1660-4601}},
  keywords     = {{Humans; Pandemics; Family; COVID-19/epidemiology; Terminal Care; Hospice Care; Sweden/epidemiology}},
  language     = {{eng}},
  month        = {{12}},
  number       = {{23}},
  publisher    = {{MDPI AG}},
  series       = {{International Journal of Environmental Research and Public Health}},
  title        = {{Dying during the COVID-19 Pandemic in Sweden : Relatives' Experiences of End-of-Life Care (the CO-LIVE Study)}},
  url          = {{http://dx.doi.org/10.3390/ijerph192316146}},
  doi          = {{10.3390/ijerph192316146}},
  volume       = {{19}},
  year         = {{2022}},
}