Abstract
BackgroundEnd-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.Methods and FindingsSystematic 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.ConclusionsIt 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.
Highlights
Do Patients Want to Die at Home? Missing Preferences Systematic Review design, data collection and analysis, decision to publish, or preparation of the manuscript
English health policy has as one of its aims the goal of enabling patients to die in their preferred place, which is believed for most to be their home [1], whether home is always the best and preferred place of death is of increasing debate [2]
Healthcare professionals are encouraged to record end of life care (EOLC) patients’ preferred place of death (PPOD) [3], with percentage of home deaths and deaths in preferred place regarded as a key performance indicator of EOLC services [4]
Summary
English health policy has as one of its aims the goal of enabling patients to die in their preferred place, which is believed for most to be their home [1], whether home is always the best and preferred place of death is of increasing debate [2]. Home is stated to be where most patients want to die because, as the foreword of the 2008 EOLC Strategy reports, “From surveys of the general public we know that, given the opportunity and right support, most people would prefer to die at home.[1]” The extent to which the preferences of the general public reflect the views of dying patients is unclear; the two viewpoints may vary due to differences in priorities [5] and whether preferences asked are hypothetical or of practical significance [6]. 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.
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