Were Clinical Routines for Good End-of-Life Care Maintained in Hospitals and Nursing Homes During the First Three Months of the Outbreak of COVID-19? A National Register Study

J Pain Symptom Manage. 2021 Jan;61(1):e11-e19. doi: 10.1016/j.jpainsymman.2020.09.043. Epub 2020 Oct 7.


Context: Although the coronavirus disease 2019 (COVID-19) pandemic might affect important clinical routines, few studies have focused on the maintenance of good quality in end-of-life care.

Objectives: The objective was to examine whether adherence to clinical routines for good end-of-life care differed for deaths because of COVID-19 compared with a reference cohort from 2019 and whether they differed between nursing homes and hospitals.

Methods: Data about five items reflecting clinical routines for persons who died an expected death from COVID-19 during the first three months of the pandemic (March-May 2020) were collected from the Swedish Register of Palliative Care. The items were compared between the COVID-19 group and the reference cohort and between the nursing home and hospital COVID-19 deaths.

Results: About 1316 expected deaths were identified in nursing homes and 685 in hospitals. Four of the five items differed for total COVID-19 group compared with the reference cohort: fewer were examined by a physician during the last days before death, pain and oral health were less likely to be assessed, and fewer had a specialized palliative care team consultation (P < 0.0001, respectively). Assessment of symptoms other than pain did not differ significantly. The five items differed between the nursing homes and hospitals in the COVID-19 group, most notably regarding the proportion of persons examined by a physician during the last days (nursing homes: 18%; hospitals: 100%).

Conclusion: This national register study shows that several clinical routines for end-of-life care did not meet the usual standards during the first three months of the COVID-19 pandemic in Sweden. Higher preparedness for and monitoring of end-of-life care quality should be integrated into future pandemic plans.

Keywords: COVID-19; end-of-life care; hospitals; nursing homes; palliative care.

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Aged, 80 and over
  • COVID-19 / mortality*
  • COVID-19 / therapy*
  • Child
  • Child, Preschool
  • Clinical Protocols*
  • Cohort Studies
  • Female
  • Hospital Mortality
  • Hospitalization*
  • Humans
  • Infant
  • Infant, Newborn
  • Male
  • Middle Aged
  • Nursing Homes*
  • Registries
  • Sweden / epidemiology
  • Terminal Care / organization & administration*
  • Young Adult