title: Physical and Psychological Distress Are Related to Dying Peacefully in Residents With Dementia in Long-Term Care Facilities.
abstract: BACKGROUND
  Although dying peacefully is considered an important outcome of high-quality palliative care, large-scale quantitative research on dying peacefully and the factors associated with a peaceful death is lacking.
  
  
  OBJECTIVE
  To gain insight into how many residents with dementia in long-term care facilities die peacefully, according to their relatives, and whether that assessment is correlated with observed physical and psychological distress.
  
  
  METHODS
  This was a retrospective cross-sectional study of deceased nursing home residents in a representative sample of long-term care facilities in Flanders, Belgium (2010). Structured post-mortem questionnaires were completed by relatives of the resident, who were asked to what extent they agreed that the resident "appeared to be at peace" during the dying process. Spearman correlation coefficients gave the correlations between physical and psychological distress (as measured using the Symptom Management at the End of Life with Dementia and Comfort Assessment in Dying at the End of Life with Dementia scales) and dying peacefully (as measured using the Quality of Dying in Long Term Care instrument).
  
  
  RESULTS
  The sample comprised 92 relatives of deceased residents with dementia. In 54% of cases, relatives indicated that the resident died peacefully. Weak-to-moderate correlations (0.2-0.57) were found between dying peacefully and physical distress in the last week of life. Regarding psychological distress, weak-to-moderate correlations were found for both the last week (0.33-0.44) and last month of life (0.28-0.47).
  
  
  CONCLUSIONS
  Only half of the residents with dementia died peacefully as perceived by their relatives. Relatives' assessment of whether death was peaceful is related to both physical and psychological distress. Further qualitative research is recommended to gain more in-depth insights into the aspects on which relatives base their judgment of dying peacefully.
authors.affiliation: Department of Public and Occupational Health & Expertise Center of Palliative Care, EMGO Institute for Health and Care Research, Vrije University Medical Center, Amsterdam, The Netherlands. Electronic address: eol@vumc.nl.
authors.forename: Maaike L
authors.initials: ML
authors.lastname: De Roo
authors.affiliation: End-of-Life Care Research Group, Vrije Universiteit Brussel and Ghent University, Brussels, Belgium.
authors.forename: Gwenda
authors.initials: G
authors.lastname: Albers
authors.affiliation: Department of Public and Occupational Health & Expertise Center of Palliative Care, EMGO Institute for Health and Care Research, Vrije University Medical Center, Amsterdam, The Netherlands; End-of-Life Care Research Group, Vrije Universiteit Brussel and Ghent University, Brussels, Belgium.
authors.forename: Luc
authors.initials: L
authors.lastname: Deliens
authors.affiliation: Department of Epidemiology and Biostatistics, EMGO Institute for Health and Care Research, Amsterdam, The Netherlands.
authors.forename: Henrica C W
authors.initials: HC
authors.lastname: de Vet
authors.affiliation: Department of Public and Occupational Health & Expertise Center of Palliative Care, EMGO Institute for Health and Care Research, Vrije University Medical Center, Amsterdam, The Netherlands; NIVEL, Netherlands Institute for Health Services Research, Utrecht, The Netherlands.
authors.forename: Anneke L
authors.initials: AL
authors.lastname: Francke
authors.affiliation: Department of Geriatrics, Ghent University Hospital, Ghent, Belgium.
authors.forename: Nele
authors.initials: N
authors.lastname: Van Den Noortgate
authors.affiliation: End-of-Life Care Research Group, Vrije Universiteit Brussel and Ghent University, Brussels, Belgium.
authors.forename: Lieve
authors.initials: L
authors.lastname: Van den Block
mesh_terms: D000369:Aged, 80 and over; D001530:Belgium / Q000453:epidemiology; D003430:Cross-Sectional Studies; D003643:Death; D003704:Dementia / Q000401:mortality / Q000503:physiopathology* / Q000523:psychology / Q000628:therapy*; D005190:Family / Q000523:psychology; D005260:Female; D006801:Humans; D007600:Judgment; D008134:Long-Term Care; D008297:Male; D008875:Middle Aged; D009735:Nursing Homes / Q000706:statistics & numerical data; D010465:Perception; D011788:Quality of Life; D012189:Retrospective Studies; D013315:Stress, Psychological / Q000401:mortality / Q000503:physiopathology* / Q000628:therapy
keywords: Peaceful death; dementia; long-term care facilities; nursing homes; palliative care; quality indicators; spirituality