title: Do Patients Want to Die at Home? A Systematic Review of the UK Literature, Focused on Missing Preferences for Place of Death.
abstract: BACKGROUND
  End-of-life care policy has a focus on enabling patients to die in their preferred place; this is believed for most to be home. This review assesses patient preferences for place of death examining: the extent of unreported preferences, the importance of patient factors (place of care and health diagnosis) and who reports preferences.
  
  
  RESULTS
  Systematic literature review of 7 electronic databases, grey literature, backwards citations from included studies and Palliative Medicine hand search. Included studies published between 2000-2015, reporting original, quantifiable results of adult UK preferences for place of death. Of 10826 articles reviewed, 61 met the inclusion criteria. Summary charts present preferences for place of death by health diagnosis, where patients were asked and who reported the preference. These charts are recalculated to include 'missing data,' the views of those whose preferences were not asked, expressed or reported or absent in studies. Missing data were common. Across all health conditions when missing data were excluded the majority preference was for home: when missing data were included, it was not known what proportion of patients with cancer, non-cancer or multiple conditions preferred home. Patients, family proxies and public all expressed a majority preference for home when missing data were excluded: when included, it was not known what proportion of patients or family proxies preferred home. Where patients wished to die was related to where they were asked their preference. Missing data calculations are limited to 'reported' data.
  
  
  CONCLUSIONS
  It is unknown what proportion of patients prefers to die at home or elsewhere. Reported preferences for place of death often exclude the views of those with no preference or not asked: when 'missing data' are included, they supress the proportion of preferences for all locations. Caution should be exercised if asserting that most patients prefer to die at home.
authors.affiliation: Primary Care Unit, Department of Public Health and Primary Care, Cambridge Institute of Public Health, University of Cambridge School of Clinical Medicine, Forvie Site, Cambridge Biomedical Campus, Cambridge, United Kingdom.
authors.forename: Sarah
authors.initials: S
authors.lastname: Hoare
authors.affiliation: Primary Care Unit, Department of Public Health and Primary Care, Cambridge Institute of Public Health, University of Cambridge School of Clinical Medicine, Forvie Site, Cambridge Biomedical Campus, Cambridge, United Kingdom.
authors.forename: Zoë Slote
authors.initials: ZS
authors.lastname: Morris
authors.affiliation: Primary Care Unit, Department of Public Health and Primary Care, Cambridge Institute of Public Health, University of Cambridge School of Clinical Medicine, Forvie Site, Cambridge Biomedical Campus, Cambridge, United Kingdom.
authors.forename: Michael P
authors.initials: MP
authors.lastname: Kelly
authors.affiliation: University of Cambridge Medical Library, School of Clinical Medicine, Box 111, Cambridge Biomedical Campus, Cambridge, United Kingdom.
authors.forename: Isla
authors.initials: I
authors.lastname: Kuhn
authors.affiliation: Primary Care Unit, Department of Public Health and Primary Care, Cambridge Institute of Public Health, University of Cambridge School of Clinical Medicine, Forvie Site, Cambridge Biomedical Campus, Cambridge, United Kingdom.
authors.forename: Stephen
authors.initials: S
authors.lastname: Barclay
mesh_terms: D003643:Death; D003657:Decision Making; D006801:Humans; D057240:Patient Preference; D006113:United Kingdom