BACKGROUND: Funding shortages and an ageing population have increased pressures on state or insurance funded end of life care for older people. Across the world, policy debate has arisen about the potential role volunteers can play, working alongside health and social care professionals in the community to support and care for the ageing and dying.
AIMS: The authors examined self-reported levels of care for the elderly by the public in England, and public opinions of community volunteering concepts to care for the elderly at the end of life. In particular, claimed willingness to help and to be helped by local people was surveyed.
METHODS: A sample of 3,590 adults in England aged 45 or more from an online access panel responded to a questionnaire in late 2017. The survey data was weighted to be representative of the population within this age band. Key literature and formative qualitative research informed the design of the survey questionnaire, which was further refined after piloting.
RESULTS: Preferences for different models of community volunteering were elicited. There was a preference for 'formal' models with increased wariness of 'informal' features. Whilst 32% of adults said they 'might join' depending on whom the group helped, unsurprisingly more personal and demanding types of help significantly reduced the claimed willingness to help. Finally, willingness to help (or be helped) by local community carers or volunteers was regarded as less attractive than care being provided by personal family, close friends or indeed health and care professionals.
CONCLUSION: Findings suggest that if community volunteering to care for elderly people at the end of life in England is to expand it may require considerable attention to the model including training for volunteers and protections for patients and volunteers as well as public education and promotion. Currently, in England, there is a clear preference for non-medical care to be delivered by close family or social care professionals, with volunteer community care regarded only as a back-up option.
Background: Little is known about the role of geographic access to inpatient palliative and end of life care (PEoLC) facilities in place of death and how geographic access varies by settlement (urban and rural). This study aims to fill this evidence gap.
Methods: Individual-level death data in 2014 (N = 430,467, aged 25 +) were extracted from the Office for National Statistics (ONS) death registry and linked to the ONS postcode directory file to derive settlement of the deceased. Drive times from patients’ place of residence to nearest inpatient PEoLC facilities were used as a proxy estimate of geographic access. A modified Poisson regression was used to examine the association between geographic access to PEoLC facilities and place of death, adjusting for patients’ socio-demographic and clinical characteristics. Two models were developed to evaluate the association between geographic access to inpatient PEoLC facilities and place of death. Model 1 compared access to hospice, for hospice deaths versus home deaths, and Model 2 compared access to hospitals, for hospital deaths versus home deaths. The magnitude of association was measured using adjusted prevalence ratios (APRs).
Results: We found an inverse association between drive time to hospice and hospice deaths (Model 1), with a dose–response relationship. Patients who lived more than 10 min away from inpatient PEoLC facilities in rural areas (Model 1: APR range 0.49–0.80; Model 2: APR range 0.79–0.98) and urban areas (Model 1: APR range 0.50–0.83; Model 2: APR range 0.98–0.99) were less likely to die there, compared to those who lived closer (i.e. = 10 min drive time). The effects were larger in rural areas compared to urban areas.
Conclusion: Geographic access to inpatient PEoLC facilities is associated with where people die, with a stronger association seen for patients who lived in rural areas. The findings highlight the need for the formulation of end of life care policies/strategies that consider differences in settlements types. Findings should feed into local end of life policies and strategies of both developed and developing countries to improve equity in health care delivery for those approaching the end of life.
BACKGROUND: Low socioeconomic position (SEP) is recognized as a risk factor for worse health outcomes. How socioeconomic factors influence end-of-life care, and the magnitude of their effect, is not understood. This review aimed to synthesise and quantify the associations between measures of SEP and use of healthcare in the last year of life.
METHODS AND FINDINGS: MEDLINE, EMBASE, PsycINFO, CINAHL, and ASSIA databases were searched without language restrictions from inception to 1 February 2019. We included empirical observational studies from high-income countries reporting an association between SEP (e.g., income, education, occupation, private medical insurance status, housing tenure, housing quality, or area-based deprivation) and place of death, plus use of acute care, specialist and nonspecialist end-of-life care, advance care planning, and quality of care in the last year of life. Methodological quality was evaluated using the Newcastle-Ottawa Quality Assessment Scale (NOS). The overall strength and direction of associations was summarised, and where sufficient comparable data were available, adjusted odds ratios (ORs) were pooled and dose-response meta-regression performed. A total of 209 studies were included (mean NOS quality score of 4.8); 112 high- to medium-quality observational studies were used in the meta-synthesis and meta-analysis (53.5% from North America, 31.0% from Europe, 8.5% from Australia, and 7.0% from Asia). Compared to people living in the least deprived neighbourhoods, people living in the most deprived neighbourhoods were more likely to die in hospital versus home (OR 1.30, 95% CI 1.23-1.38, p < 0.001), to receive acute hospital-based care in the last 3 months of life (OR 1.16, 95% CI 1.08-1.25, p < 0.001), and to not receive specialist palliative care (OR 1.13, 95% CI 1.07-1.19, p < 0.001). For every quintile increase in area deprivation, hospital versus home death was more likely (OR 1.07, 95% CI 1.05-1.08, p < 0.001), and not receiving specialist palliative care was more likely (OR 1.03, 95% CI 1.02-1.05, p < 0.001). Compared to the most educated (qualifications or years of education completed), the least educated people were more likely to not receive specialist palliative care (OR 1.26, 95% CI 1.07-1.49, p = 0.005). The observational nature of the studies included and the focus on high-income countries limit the conclusions of this review.
CONCLUSIONS: In high-income countries, low SEP is a risk factor for hospital death as well as other indicators of potentially poor-quality end-of-life care, with evidence of a dose response indicating that inequality persists across the social stratum. These findings should stimulate widespread efforts to reduce socioeconomic inequality towards the end of life.
Previous studies have revealed that there is significant geographical variation in place of death in (PoD) England, with sociodemographic and clinical characteristics explaining = 25% of this variation. Service factors, mostly modifiable, may account for some of the unexplained variation, but their role had never been evaluated systematically. A national population-based observational study in England, using National Death Registration Database (2014) linked to area-level service data from public domains, categorised by commissioning, type and capacity, location and workforce of the services, and the service use. The relationship between the service variables and PoD was evaluated using beta regression at the area level and using generalised linear mixed models at the patient level. The relative contribution of service factors at the area level was assessed using the per cent of variance explained, measured by R2. The total impact of service factors was evaluated by the area under the receiver operating characteristic curve (AUC). The independent effect of service variables was measured at the individual level by odds ratios (ORs)., Among the 431,735 adult deaths, hospitals were the most common PoD (47.3%), followed by care homes (23.1%), homes (22.5%) and hospices (6.1%). One-third (30.3%) of the deaths were due to cancer and two-thirds (69.7%) were due to non-cancer causes. Almost all service categories studied were associated with some of the area-level variation in PoD. Service type and capacity had the strongest link among all service categories, explaining 14.2–73.8% of the variation; service location explained 10.8–34.1% of the variation. The contribution of other service categories to PoD was inconsistent. At the individual level, service variables appeared to be more useful in predicting death in hospice than in hospital or care home, with most AUCs in the fair performance range (0.603–0.691). The independent effect of service variables on PoD was small overall, but consistent. Distance to the nearest care facility was negatively associated with death in that facility. At the Clinical Commissioning Group level, the number of hospices per 10,000 adults was associated with a higher chance of hospice death in non-cancer causes (OR 30.88, 99% confidence interval 3.46 to 275.44), but a lower chance of hospice death in cancer causes. There was evidence for an interaction effect between the service variables and sociodemographic variables on PoD., This study was limited by data availability, particularly those specific to palliative and end-of-life care; therefore, the findings should be interpreted with caution. Data limitations were partly due to the lack of attention and investment in this area., A link was found between service factors and PoD. Hospice capacity was associated with hospice death in non-cancer cases. Distance to the nearest care facility was negatively correlated with the probability of a patient dying there. Effect size of the service factors was overall small, but the interactive effect between service factors and sociodemographic variables suggests that high-quality end-of-life care needs to be built on service-level configuration tailored to individuals’ circumstances., A large data gap was identified and data collection is required nationally on services relevant to palliative and end-of-life care. Future research is needed to verify the identified links between service factors and PoD., The National Institute for Health Research Health Services and Delivery Research programme.
Background: Emergency department (ED) attendance for older people towards the end of life is common and increasing, despite most preferring home-based care. We aimed to review the factors associated with older people's ED attendance towards the end of life.
Methods: Systematic review using Medline, Embase, PsychINFO, CINAHL and Web of Science from inception to March 2017. Included studies quantitatively examined factors associated with ED attendance for people aged =65 years within the last year of life. We assessed study quality using the QualSyst tool and determined evidence strength based on quality, quantity and consistency. We narratively synthesized the quantitative findings.
Results: Of 3824 publications identified, 21 were included, combining data from 1 565 187 participants. 17/21 studies were from the USA and 19/21 used routinely collected data. We identified 47 factors and 21 were included in the final model. We found high strength evidence for associations between ED attendance and palliative/hospice care (adjusted effect estimate range: 0.1-0.94); non-white ethnicity (1.03-2.16); male gender (1.04-1.83, except 0.70 in one sub-sample) and rural areas (0.98-1.79). The final model included socio-demographic, illness and service factors, with largest effect sizes for service factors.
Conclusions: In this synthesis, receiving palliative care was associated with lower ED attendance in the last year of life for older adults. This has implications for service models for older people nearing the end of life. However, there is limited evidence from European countries and none from low or middle-income countries, which warrants further research.
BACKGROUND: Liver disease represents the third commonest cause of death in adults of working age and is associated with an extensive illness burden towards the end of life. Despite this, patients rarely receive palliative care and are unlikely to be involved in advance care planning discussions. Evidence addressing how existing services meet end-of-life needs, and exploring attitudes of patients and carers towards palliative care, is lacking.
AIM: To explore the needs of patients and carers with liver disease towards the end of life, evaluate how existing services meet need, and examine patient and carer attitudes towards palliative care.
DESIGN: Qualitative study - semi-structured interviews analysed using thematic analysis. Settings/participants: A total of 17 participants (12 patients, 5 bereaved carers) recruited from University Hospitals Bristol.
RESULTS: Participants described escalating physical, psychological and social needs as liver disease progressed, including disabling symptoms, emotional distress and uncertainty, addiction, financial hardship and social isolation. End-of-life needs were incompatible with the healthcare services available to address them; these were heavily centred in secondary care, focussed on disease modification at the expense of symptom control and provided limited support after curative options were exhausted. Attitudes towards palliative care were mixed, however, participants valued opportunities to express future care preferences (particularly relating to avoidance of hospital admission towards the end of life) and an increased focus on symptomatic and logistical aspects of care.
CONCLUSION: The needs of patients with liver disease and their carers are frequently incompatible with the healthcare services available to them towards the end of life. Novel strategies, which recognise the life-limiting nature of liver disease explicitly and improve coordination with community services, are required if end-of-life care is to improve.
BACKGROUND: Liver disease mortality increased by 400% in the UK between 1970 and 2010, resulting in rising pressures on acute hospital services, and an increasing need for end-of-life care. We aimed to assess the effect of demographic, clinical, and health-care factors on costs, patterns of health-care use, and place of death in a national cohort of patients with cirrhosis and ascites in their last year of life.
METHODS: We did a retrospective, nationwide analysis of all patients who died from cirrhosis in England between 2013 and 2015, who required large-volume paracentesis in their last year of life. The outcomes measured were health-care costs accrued in the last year of life, number of inpatient days in last year of life, 30-day readmission rate, and occurrence of unplanned hospital death (probability of dying in hospital after unplanned admission). Using generalised linear and logistic regression models, we examined the effect of 12 independent variables on each outcome: sex, ethnicity, age at death, index of multiple deprivation quintile, year of death, liver disease causing death, place of death, time from index presentation in last year of life to death, whether enrolled in a day-case paracentesis service (care group), paracentesis ratio (number of day-case large-volume paracentesis procedures as a proportion of the total number of procedures in the last year of life), number of hospital episodes in the last year of life (not involving large-volume paracentesis), and number of large-volume paracentesis procedures in the last year of life.
FINDINGS: Between Jan 1, 2013, and Dec 31, 2015, 13 818 people in England died from liver disease and had large-volume paracentesis within their last year of life. For all patients, mean cost of the last year of life was £21 113 (SD 16 881), 17 888 (52·5%) of 34 068 readmissions occurred within 30 days of discharge, and 10 341 (74·8%) of 13 818 deaths occurred in hospital, of which 10 045 (97·1%) followed an emergency hospital admission. Patients who attended a day-case large-volume paracentesis service within their last year of life had significant reductions in cost (-£4240, 95% CI -4829 to -3651; p<0·0001), number of inpatient bed days (-16·98 days, -18·45 to -15·51; p<0·0001), probability of early readmission (odds ratio [OR] 0·35, 95% CI 0·31 to 0·40; p<0·0001), and probability of dying in hospital after unplanned admission (0·31, 0·27 to 0·34; p<0·0001), compared with patients who had unplanned care. For patients enrolled in day-case services, improvements in outcomes correlated with the proportion of large-volume paracentesis procedures done in a day-case (vs unplanned) setting.
INTERPRETATION: The use of day-case large-volume paracentesis services in the last year of life was associated with lower costs, reduced pressure on acute hospital services, and a lower probability of dying in hospital, compared with patients who received exclusively unplanned care in their last year of life. Wider adoption of day-case models of care could reduce costs and improve outcomes in the last year of life.
BACKGROUND: Population ageing represents a global challenge for future end-of-life care. Given new trends in place of death, it is vital to examine where the rising number of deaths will occur in future years and implications for health and social care.
AIM: To project where people will die from 2015 to 2040 across all care settings in England and Wales.
DESIGN: Population-based trend analysis and projections using simple linear modelling. Age- and gender-specific proportions of deaths in hospital, care home, home, hospice and 'other' were applied to numbers of expected future deaths.
Setting/population: All deaths (2004-2014) from death registration data and predicted deaths (2015-2040) from official population forecasts in England and Wales.
RESULTS: Annual deaths are projected to increase from 501,424 in 2014 (38.8% aged 85 years and over) to 635,814 in 2040 (53.6% aged 85 years and over). Between 2004 and 2014, proportions of home and care home deaths increased (18.3%–22.9% and 16.7%– 21.2%) while hospital deaths declined (57.9%–48.1%). If current trends continue, numbers of deaths in care homes and homes will increase by 108.1% and 88.6%, with care home the most common place of death by 2040. If care home capacity does not expand and additional deaths occur in hospital, hospital deaths will start rising by 2023.
CONCLUSION: To sustain current trends, end-of-life care provision in care homes and the community needs to double by 2040. An infrastructure across care settings that supports rising annual deaths is urgently needed; otherwise, hospital deaths will increase.
Background: Efforts to improve end of life care (EoLC) have made tangible impacts on care in adults, including enabling more people to die at their preferred place of death (PoD), usually home or hospices. Little is known how the PoD in children and young people (CYP, ≤24 years) has changed over time, especially in the context of a series of national initiatives for EoLC improvement since the late 1990s. To inform evidence-based policy-making and service development, we evaluated the national trends of PoD and the associated factors in CYP who died with cancer.
Methods: Population-based observational study in the National Health Service (NHS) England, 1993-2014. All non-accidental CYP deaths with cancer (N = 12,774) were extracted from the death registration database of the Office for National Statistics (ONS).
Results: Hospital deaths reduced from >50 to 45 %, hospice deaths were rare but more than doubled from 6 % in 1993-2000 to 13 % in 2005-2014, and home deaths fluctuated at around 40 %. Those aged 0-19 years were more likely to die at home than young adults (adjusted proportion ratio (PRs): 1.23-1.62); haematological cancer patients or those with 2+ comorbid conditions had higher chances of hospital death (PRs for home: 0.18-0.75, hospice: 0.04-0.37); deprivation was associated with a reduced chance of home death (PRs: 0.76-0.84). The residential region affected hospice but not home deaths. The variations of PoD by cause of death, comorbid conditions and deprivation slightly decreased with time.
Conclusions: Hospitals and home were the main EoLC settings for CYP with cancer. Home death rates barely changed in the past two decades; deaths in hospitals remained the most common but slightly shifted towards hospices. CYP with haematological malignancy or with comorbid conditions had persistently high hospital deaths; these cases had an even lower chance of deaths in hospices (50 %) than at home. There were deprivation- and area-related inequalities in PoD which may need service- and/or policy-level intervention. The findings highlight a need for CYP specific initiatives to enhance EoLC support and capacities both at home and in hospices.
Il y a peu de corrélation dans les impacts de la planification préalable des soins (advance care planning, ACP) sur les décès en soins palliatifs : les conclusions de l'étude de cohorte rétrospective sont présentées ici après exposition des objectifs et des résultats.