title: Quality of dying in nursing home residents dying with dementia: does advanced care planning matter? A nationwide postmortem study.
abstract: BACKGROUND
  Advance care planning is considered a central component of good quality palliative care and especially relevant for people who lose the capacity to make decisions at the end of life, which is the case for many nursing home residents with dementia. We set out to investigate to what extent (1) advance care planning in the form of written advance patient directives and verbal communication with patient and/or relatives about future care and (2) the existence of written advance general practitioner orders are related to the quality of dying of nursing home residents with dementia.
  
  
  METHODS
  Cross-sectional study of deaths (2010) using random cluster-sampling. Representative sample of nursing homes in Flanders, Belgium. Deaths of residents with dementia in a three-month period were reported; for each the nurse most involved in care, GP and closest relative completed structured questionnaires.
  
  
  RESULTS
  We identified 101 deaths of residents with dementia in 69 nursing homes (58% response rate). A written advance patient directive was present for 17.5%, GP-orders for 56.7%. Controlling for socio-demographic/clinical characteristics in multivariate regression analyses, chances of having a higher mean rating of emotional well-being (less fear and anxiety) on the Comfort Assessment in Dying with Dementia scale were three times higher with a written advance patient directive and more specifically when having a do-not-resuscitate order (AOR 3.45; CI,1.1-11) than for those without either (AOR 2.99; CI,1.1-8.3). We found no association between verbal communication or having a GP order and quality of dying.
  
  
  CONCLUSIONS
  For nursing home residents with dementia there is a strong association between having a written advance directive and quality of dying. Where wishes are written, relatives report lower levels of emotional distress at the end of life. These results underpin the importance of advance care planning for people with dementia and beginning this process as early as possible.
authors.affiliation: End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium.
authors.forename: An
authors.initials: A
authors.lastname: Vandervoort
authors.affiliation: End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium.
authors.forename: Dirk
authors.initials: D
authors.lastname: Houttekier
authors.affiliation: End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium; Heymans Institute of Pharmacology, Ghent University, Ghent, Belgium.
authors.forename: Robert
authors.initials: R
authors.lastname: Vander Stichele
authors.affiliation: EMGO Institute for Health and Care Research and Expertise Center for Palliative Care, Department of General Practice & Elderly Care Medicine, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Jenny T
authors.initials: JT
authors.lastname: van der Steen
authors.affiliation: End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium; Department of Family Medicine, Vrije Universiteit Brussel, Brussels, Belgium.
authors.forename: Lieve
authors.initials: L
authors.lastname: Van den Block
mesh_terms: D032722:Advance Care Planning / Q000706:statistics & numerical data*; D000369:Aged, 80 and over; D001344:Autopsy; D001530:Belgium / Q000453:epidemiology; D003643:Death; D003704:Dementia / Q000401:mortality*; D005260:Female; D006801:Humans; D008297:Male; D009735:Nursing Homes / Q000706:statistics & numerical data*