Abstract
BackgroundHome-based models of hospice and palliative care are promoted with the argument that most people prefer to die at home. We examined the heterogeneity in preferences for home death and explored, for the first time, changes of preference with illness progression.MethodsWe searched for studies on adult preferences for place of care at the end of life or place of death in MEDLINE (1966–2011), EMBASE (1980–2011), psycINFO (1967–2011), CINAHL (1982–2011), six palliative care journals (2006–11) and reference lists. Standard criteria were used to grade study quality and evidence strength. Scatter plots showed the percentage preferring home death amongst patients, lay caregivers and general public, by study quality, year, weighted by sample size.Results210 studies reported preferences of just over 100,000 people from 33 countries, including 34,021 patients, 19,514 caregivers and 29,926 general public members. 68% of studies with quantitative data were of low quality; only 76 provided the question used to elicit preferences. There was moderate evidence that most people prefer a home death–this was found in 75% of studies, 9/14 of those of high quality. Amongst the latter and excluding outliers, home preference estimates ranged 31% to 87% for patients (9 studies), 25% to 64% for caregivers (5 studies), 49% to 70% for the public (4 studies). 20% of 1395 patients in 10 studies (2 of high quality) changed their preference, but statistical significance was untested.ConclusionsControlling for methodological weaknesses, we found evidence that most people prefer to die at home. Around four fifths of patients did not change preference as their illness progressed. This supports focusing on home-based care for patients with advanced illness yet urges policy-makers to secure hospice and palliative care elsewhere for those who think differently or change their mind. Research must be clear on how preferences are elicited. There is an urgent need for studies examining change of preferences towards death.
Highlights
Home-based models of hospice and palliative care are promoted with the argument that most people prefer to die at home
Many countries including the United States (US) and the United Kingdom (UK) have increased the focus on home-based models of hospice and palliative care with the argument that most people prefer to die at home
General overview The studies reported on the preferences for place of end of life care and/or place of death of 29,926 members of the general public, 34,021 patients, 19,514 caregivers, 11,613 older people, 3,504 health professionals and 1,729 medical or nursing students, from 33 countries
Summary
Home-based models of hospice and palliative care are promoted with the argument that most people prefer to die at home. As chronic conditions are increasingly leading causes of death [4,7], most people should expect a period of terminal illness to precede death. This urged projections of place of death, with a view to inform how the care of terminally ill patients is planned for the future [8,9,10]. Many countries including the United States (US) and the United Kingdom (UK) have increased the focus on home-based models of hospice and palliative care with the argument that most people prefer to die at home. It is commonly accepted that dying in hospital remains frequent because people change their mind as their illness progresses, based in two studies conducted in the 1980s in London, UK [17,18]
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