title: End-of-life decisions in individuals dying with dementia in Belgium.
abstract: OBJECTIVE
  To describe the prevalence and characteristics of end-of-life decisions in individuals dying with dementia in Belgium.
  
  
  METHODS
  Retrospective mail survey.
  
  
  METHODS
  Brussels and Flanders, Belgium.
  
  
  METHODS
  Physicians certifying a large random sample of deaths (n = 8,627).
  
  
  METHODS
  End-of-life decision-making in individuals dying with dementia (n = 361) was compared through bivariate and multivariable analyses with decision-making in individuals dying from cancer (n = 1,276) as reference group.
  
  
  RESULTS
  Response rate was 54.7%. The intense pain and symptoms of individuals with dementia was alleviated less often than those of individuals with cancer (odds ratio (OR) = 0.50, P < .001), and individuals with dementia were more likely to have life-prolonging treatment withheld or withdrawn (OR = 1.40, P = .048). Five individuals with dementia (1.3%) requested euthanasia but did not receive it; 60 (4.7%) individuals with cancer who requested euthanasia received it, and 48 (3.8%) who requested it did not (OR = 0.04, P = .047). Individuals with dementia rarely had capacity to participate in decision-making, which more often involved their families than in individuals with cancer (OR = 1.99, P = .009). Little prospect of improvement (59.7%), pointless life prolongation (54.5%), poor quality of life (46.2%), and prevention of further suffering (37.6%) were important reasons for end-of-life decisions in individuals with dementia.
  
  
  CONCLUSIONS
  End-of-life decision-making in individuals dying with dementia differs from that in individuals with cancer, more often involving forgoing of life-prolonging treatment and less often involving intensifying pain and symptom treatment. Considerations typically involve the prospects of the individual with dementia as opposed to the severity of their present situation. Optimal processes of advance care planning may address the burdensome decision falling to physicians and family regarding when to allow the individual to die.
authors: End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium.
authors: Kenneth
authors: K
authors: Chambaere
authors: Joachim
authors: J
authors: Cohen
authors: Lenzo
authors: L
authors: Robijn
authors: S Kathleen
authors: SK
authors: Bailey
authors: Luc
authors: L
authors: Deliens
mesh_terms: D032722:Advance Care Planning; D000369:Aged, 80 and over; D001530:Belgium; D003657:Decision Making; D003704:Dementia / Q000150:complications / Q000523:psychology* / Q000628:therapy*; D005260:Female; D006801:Humans; D008020:Life Support Care; D008297:Male; D009369:Neoplasms / Q000150:complications / Q000523:psychology / Q000628:therapy; D010358:Patient Participation; D012189:Retrospective Studies; D013727:Terminal Care
keywords: advance care planning; dementia; end-of-Life decisions; palliative care