Heterogeneity and changes in preferences for dying at home: a systematic review

Barbara Gomes, Natalia Calanzani, Marjolein Gysels, Sue Hall, Irene J Higginson, Barbara Gomes, Natalia Calanzani, Marjolein Gysels, Sue Hall, Irene J Higginson

Abstract

Background: Home-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.

Methods: We 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.

Results: 210 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.

Conclusions: Controlling 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.

Figures

Figure 1
Figure 1
Flow of studies through review.
Figure 2
Figure 2
Quality assessment for studies using quantitative and qualitative methods. Footnote: Quantitative criteria applied to 169 studies (153 purely quantitative, 16 using both quantitative and qualitative methods). Qualitative criteria applied to 57 studies (41 purely qualitative and 16 using both quantitative and qualitative methods). * Rating for study design (poor = retrospective, fair = cross-sectional, good = prospective). ** Rating for acceptable response rate (poor <60% or unknown, fair 60%-69%, good ≥70%).
Figure 3
Figure 3
Preferences for dying at home: population group, study quality, year of publication. Footnote: The three plots show the percentage of participants expressing a preference for dying at home in each study by population group (general public, patients and caregivers). The number of dots indicates the number of studies included and the area of the dots indicates the number of participants in each study (largest sample size was 4,198 participants). Black and pink dots in studies conducted with patients distinguish between studies where >50% of patients had cancer (pink) and studies where ≥50% had non-malignant diseases (black); grey dots represent studies where the proportion of patients who had cancer was unknown.
Figure 4
Figure 4
Preferences for dying at home amongst patients and their caregivers. Footnote: The plot shows in each study the percentage of patients and their caregivers expressing a preference for dying at home. The number of dots indicates the number of studies included (n = 34) and the area of the dots indicates the number of participants in the study (largest dot represents 4175 participants). Blue dots report to caregivers and pink dots to patients (dots are superimposed for one study as the percentages were 100% for both patients and caregivers). Country region was unknown in six studies.

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