Do Patients Want to Die at Home? A Systematic Review of the UK Literature, Focused on Missing Preferences for Place of Death

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.

Rural residents' perspectives on the rural ‘good death’: a scoping review

“…Locality was also identified as a critical element, with deaths and dying ideally to be connected with the rural/remote community. The literature increasingly reports that place of death is one measure of a contemporary 'good death' as supported by the majority of articles in this review; however as Biggs (2014) suggests, place is only one factor of importance and not necessarily the main one for all people (Hoare et al 2015, Davies et al 2016, Rainsford et al 2016). If it is not possible to die at home surrounded by family then it is important to die within the rural community.…”

“…The literature increasingly reports that place of death is one measure of a contemporary ‘good death’ as supported by the majority of articles in this review; however as Biggs () suggests, place is only one factor of importance and not necessarily the main one for all people (Hoare et al . , Davies et al . , Rainsford et al .…”

Effect of the duration of hospice and palliative care on the quality of dying and death in patients with terminal cancer: A nationwide multicentre study

“…The present study indicated that a terminal cancer patient who stays in HPC for 22 days or longer, rather than 8-21 days is more likely to feel comfortable in the place of care. Several studies have reported that HPC provides a suitable environment for death, and that hospice is the second most preferred place to die, after the home (Hoare et al, 2015). In the present study, HPC was more likely to be regarded as a comfortable place for patients who had stays of 22-84 days, rather than 8-21 days.…”

“…Early initiation of hospice and palliative care (HPC) for cancer patients can lead to significantly better relief from pain, improved QOL, more cost-effective treatment and prolonged survival time at the end-of-life (EOL), and can also cause less psychiatric morbidity in caregivers (Chen et al, 2016;Das et al, 2016;Hoare, Morris, Kelly, Kuhn, & Barclay, 2015;Lee et al, 2015;Lowery et al, 2013;Shin et al, 2010;Spiro et al, 2004;Temel et al, 2010;Wright et al, 2008). Despite the benefits of HPC, late referral to HPC remains common in many countries (Karlsson, Friberg, Wallengren, & Ohlen, 2014;McCarthy, Burns, Davis, & Phillips, 2003;Tang et al, 2011), including Korea (Lee et al, 2015;Shin et al, 2010).…”

End-of-life planning with frail patients attending general practice: an exploratory prospective cross-sectional study

“…In the current study, SPICT was helpful in prompting GPs to raise end-of-life issues systematically. Given the known inaccuracies of healthcare professionals in predicting death,33 and in recognising the clear risks of misinterpreting patients’ wishes if they are not provided with the opportunity to express their preferences,34 the approach used in this exploratory study may be useful in further studies.…”