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

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          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.

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          Most cited references61

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          Family perspectives on end-of-life care at the last place of care.

          Joan M Teno, Brian R Clarridge, Virginia Casey … (2004)
          Over the past century, nursing homes and hospitals increasingly have become the site of death, yet no national studies have examined the adequacy or quality of end-of-life care in institutional settings compared with deaths at home. To evaluate the US dying experience at home and in institutional settings. Mortality follow-back survey of family members or other knowledgeable informants representing 1578 decedents, with a 2-stage probability sample used to estimate end-of-life care outcomes for 1.97 million deaths from chronic illness in the United States in 2000. Informants were asked via telephone about the patient's experience at the last place of care at which the patient spent more than 48 hours. Patient- and family-centered end-of-life care outcomes, including whether health care workers (1) provided the desired physical comfort and emotional support to the dying person, (2) supported shared decision making, (3) treated the dying person with respect, (4) attended to the emotional needs of the family, and (5) provided coordinated care. For 1059 of 1578 decedents (67.1%), the last place of care was an institution. Of 519 (32.9%) patients dying at home represented by this sample, 198 (38.2%) did not receive nursing services; 65 (12.5%) had home nursing services, and 256 (49.3%) had home hospice services. About one quarter of all patients with pain or dyspnea did not receive adequate treatment, and one quarter reported concerns with physician communication. More than one third of respondents cared for by a home health agency, nursing home, or hospital reported insufficient emotional support for the patient and/or 1 or more concerns with family emotional support, compared with about one fifth of those receiving home hospice services. Nursing home residents were less likely than those cared for in a hospital or by home hospice services to always have been treated with respect at the end of life (68.2% vs 79.6% and 96.2%, respectively). Family members of patients receiving hospice services were more satisfied with overall quality of care: 70.7% rated care as "excellent" compared with less than 50% of those dying in an institutional setting or with home health services (P<.001). Many people dying in institutions have unmet needs for symptom amelioration, physician communication, emotional support, and being treated with respect. Family members of decedents who received care at home with hospice services were more likely to report a favorable dying experience.
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            Which patients with cancer die at home? A study of six European countries using death certificate data.

            Julia Addington-Hall, Guido Miccinesi, Stein Kaasa … (2010)
            This study examines the proportion of cancer deaths occurring at home in six European countries in relation to illness and to demographic and health care factors. Death certificate data of all cancer-related deaths in 2002 in Italy and 2003 in Belgium, the Netherlands, Norway, England, and Wales (N = 238,216) were linked with regional health care and area statistics. Multivariate binomial logistic regressions were performed to examine factors associated with dying at home. The percentage of all cancer deaths occurring at home was 12.8 in Norway, 22.1 in England, 22.7 in Wales, 27.9 in Belgium, 35.8 in Italy, and 45.4 in the Netherlands. Having solid cancers and being married increased the chances of dying at home in all countries. Being older and being a woman decreased the chances of dying at home, except in Italy where the opposite was the case. A higher educational attainment was associated with better chances of dying at home in Belgium, Italy, and Norway (countries where information on educational attainment was available). Better chances of dying at home were also associated with living in less urbanized areas in all countries but England. The number of hospital and care home beds seemed not to be universally strong predictors of dying at home. There are large country differences in the proportion of patients with cancer dying at home, and these seem influenced by country-specific cultural, social, and health care factors. Alongside cross-national differences, country-specific aspects need to be considered in the development of policy strategies facilitating home death.
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              Preference for place of care and place of death in palliative care: are these different questions?

              M. Agar, K. Abernethy, D Currow … (2008)
              Place of death is at times suggested as an outcome for palliative care services. This study aimed to describe longitudinal preferences for place of care and place of death over time for patients and their caregivers. Longitudinal paired data of patient/caregiver dyads from a prospective unblinded cluster randomised control trial were used. Patients and caregivers were separately asked by the palliative care nurse their preference at that time for place of care and place of death. Longitudinal changes over time for both questions were mapped; patterns of agreement (patient and caregiver; and preference for place of death when last asked and actual placed of death) were analysed with kappa statistics. Seventy-one patient/caregiver dyads were analysed. In longitudinal preferences, preferences for both the place of care (asked a mean of >6 times) and place of death (asked a mean of >4 times) changed for patients (28% and 30% respectively) and caregivers (31% and 30%, respectively). In agreement between patients and caregivers, agreement between preference of place of care and preferred place of death when asked contemporaneously for patients and caregivers was low [56% (kappa 0.33) and 36% (kappa 0.35) respectively]. In preference versus actual place of death, preferences were met for 37.5% of participants for home death; 62.5% for hospital; 76.9% for hospice and 63.6% for aged care facility. This study suggests that there are two conversations: preference for current place of care and preference for care at the time of death. Place of care is not a euphemism for place of death; and further research is needed to delineate these. Patient and caregiver preferences may not change simultaneously. Implications of any mismatch between actual events and preferences need to be explored.
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                Author and article information

                Contributors
                Barbara Gomes
                Natalia Calanzani
                Marjolein Gysels
                Sue Hall
                Irene J Higginson
                Journal
                Journal ID (nlm-ta): BMC Palliat Care
                Journal ID (iso-abbrev): BMC Palliat Care
                Title: BMC Palliative Care
                Publisher: BioMed Central
                ISSN (Electronic): 1472-684X
                Publication date Collection: 2013
                Publication date (Electronic): 15 February 2013
                Volume: 12
                Page: 7
                Affiliations
                [1 ]King’s College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, Bessemer Road, London, SE5 9PJ, UK
                Article
                Publisher ID: 1472-684X-12-7
                DOI: 10.1186/1472-684X-12-7
                PMC ID: 3623898
                PubMed ID: 23414145
                SO-VID: 8e17f1a6-db68-43ef-9c5e-027125001fdf
                Copyright © Copyright © 2013 Gomes et al; licensee BioMed Central Ltd.
                License:

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                Date received : 20 November 2012
                Date accepted : 11 February 2013
                Categories
                Subject: Research Article

                ScienceOpen disciplines: Anesthesiology & Pain management
                Keywords: patient preference,hospice care,palliative care,hospices,terminal care,patient satisfaction
                Data availability:
                ScienceOpen disciplines: Anesthesiology & Pain management
                Keywords: patient preference, hospice care, palliative care, hospices, terminal care, patient satisfaction

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