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Objectives: Congruence between the preferred and actual place of death is recognised as an important quality indicator in end-of-life care. However, there may be complexities about preferences that are ignored in summary congruence measures. This article examined factors associated with preferred place of death, actual place of death, and congruence for a sample of patients who had received specialist palliative care in the last three months of life in Ireland. Methods: This article analysed merged data from two previously published mortality follow-back surveys: Economic Evaluation of Palliative Care in Ireland (EEPCI); Irish component of International Access, Rights and Empowerment (IARE I). Logistic regression models examined factors associated with (a) preferences for home death versus institutional setting, (b) home death versus hospital death, and (c) congruent versus non-congruent death. Setting: Four regions with differing levels of specialist palliative care development in Ireland. Participants: Mean age 77, 50% female/male, 19% living alone, 64% main diagnosis cancer. Data collected 2011-2015, regression model sample sizes: n = 342-351. Results: Congruence between preferred and actual place of death in the raw merged dataset was 51%. Patients living alone were significantly less likely to prefer home versus institution death (OR 0.389, 95%CI 0.157-0.961), less likely to die at home (OR 0.383, 95%CI 0.274-0.536), but had no significant association with congruence. Conclusions: The findings highlight the value in examining place of death preferences as well as congruence, because preferences may be influenced by what is feasible rather than what patients would like. The analyses also underline the importance of well-resourced community-based supports, including homecare, facilitating hospital discharge, and management of complex (eg, non-cancer) conditions, to facilitate patients to die in their preferred place.

Introduction: Little consideration has been given to how the provision of palliative and end-of-life care in care homes was affected by COVID-19. The aims of this study were to: (i) investigate the response of UK care homes in meeting the rapidly increasing need for palliative and end-of-life care during the COVID-19 pandemic and (ii) propose policy recommendations for strengthening the provision of palliative and end-of-life care within care homes., Materials and Methods: A mixed methods observational study was conducted, which incorporated (i) an online cross-sectional survey of UK care homes and (ii) qualitative interviews with care home practitioners. Participants for the survey were recruited between April and September 2021. Survey participants indicating availability to participate in an interview were recruited using a purposive sampling approach between June and October 2021. Data were integrated through analytic triangulation in which we sought areas of convergence, divergence, and complementarity., Results: There were 107 responses to the survey and 27 interviews. We found that (i) relationship-centered care is crucial to high-quality palliative and end-of-life care within care homes, but this was disrupted during the pandemic. (ii) Care homes' ability to maintain high-quality relationship-centered care required key "pillars" being in place: integration with external healthcare systems, digital inclusion, and a supported workforce. Inequities within the care home sector meant that in some services these pillars were compromised, and relationship-centered care suffered. (iii) The provision of relationship-centered care was undermined by care home staff feeling that their efforts and expertise in delivering palliative and end-of-life care often went unrecognized/undervalued., Conclusion: Relationship-centered care is a key component of high-quality palliative and end-of-life care in care homes, but this was disrupted during the COVID-19 pandemic. We identify key policy priorities to equip care homes with the resources, capacity, and expertise needed to deliver palliative and end-of-life care: (i) integration within health and social care systems, (ii) digital inclusivity, (iii) workforce development, (iv) support for care home managers, and (v) addressing (dis)parities of esteem. These policy recommendations inform, extend, and align with policies and initiatives within the UK and internationally., Competing Interests: KS is funded by a National Institute for Health and Care Research (NIHR) Clinician Scientist Fellowship (CS-2015-15-005) and is the Laing Galazka Chair in Palliative Care at King's College London, funded by an endowment from Cicely Saunders International and the Kirby Laing Foundation. CE is funded by a Health Education England/NIHR Senior Clinical Lectureship (ICA-SCL-2015-01-001). CG is an NIHR Senior Investigator. SB is part-funded by the NIHR Applied Research Collaboration East of England (ARC EoE). IH is an NIHR Emeritus Senior Investigator, is supported by the NIHR ARC South London (SL) at King's College Hospital National Health Service Foundation Trust, and leads the Palliative and End-of-Life Care theme of the NIHR ARC South London and co-leads the national theme in this with SB. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2023 Bradshaw, Ostler, Goodman, Batkovskyte, Ellis-Smith, Tunnard, Bone, Barclay, Vernon, Higginson, Evans and Sleeman.)

Background: Heart failure (HF) is increasingly prevalent in the growing elderly population and commonly associated with cognitive impairment. We compared trends in place of death (PoD) of HF patients with/without comorbid dementia around the implementation period of the Mental Capacity Act (MCA) in October 2007, this legislation supporting patient-centred decision making for those with reduced agency., Methods: Analyses of death certification data for England between January 2001 and December 2018, describing the PoD and sociodemographic characteristics of all people ≥ 65 years registered with HF as the underlying cause of death, with/without a mention of comorbid dementia. We used modified Poisson regression with robust error variance to determine the prevalence ratio (PR) of the outcome in dying at home, in care homes or hospices compared to dying in hospital. Covariates included year of death, age, gender, marital status, comorbidity burden, index of multiple deprivation and urban/rural settings., Results: One hundred twenty thousand sixty-eight HF-related death records were included of which 8199 mentioned dementia as a contributory cause. The overall prevalence proportion of dementia was 6.8%, the trend significantly increasing from 5.6 to 8.0% pre- and post-MCA (Cochran-Armitage trend test p < 0.0001). Dementia was coded as unspecified (78.2%), Alzheimer's disease (13.5%) and vascular (8.3%). Demented decedents were commonly older, female, and with more comorbidities. Pre-MCA, PoD for non-demented HF patients was hospital 68.2%, care homes 20.2% and 10.7% dying at home. Corresponding figures for those with comorbid dementia were 47.6%, 48.0% and 4.2%, respectively. Following MCA enforcement, PoD for those without dementia shifted from hospital to home, 62.5% and 17.2%, respectively; PR: 1.026 [95%CI: 1.024-1.029]. While home deaths also rose to 10.0% for those with dementia, with hospital deaths increasing to 50.4%, this trend was insignificant, PR: 1.001 [0.988-1.015]. Care home deaths reduced for all, with/without dementia, PR: 0.959 [0.949-0.969] and PR: 0.996 [0.993-0.998], respectively. Hospice as PoD was rare for both groups with no appreciable change over the study period., Conclusions: Our analyses suggest the MCA did not materially affect the PoD of HF decedents with comorbid dementia, likely reflecting difficulties implementing this legislation in real-life clinical practice., (© 2022. The Author(s).)

Introduction: Health and social care services worldwide need to support ageing populations to live well with advanced progressive conditions while adapting to functional decline and finitude. We aimed to identify and map common elements of effective geriatric and palliative care services and consider their scalability and generalisability to high, middle and low-income countries., Methods: Tertiary systematic review (Cochrane Database of Systematic Reviews, CINAHL, Embase, January 2000-October 2019) of studies in geriatric or palliative care that demonstrated improved quality of life and/or health service use outcomes among older people with advanced progressive conditions. Using frameworks for health system analysis, service elements were identified. We used a staged, iterative process to develop a 'common components' logic model and consulted experts in geriatric or palliative care from high, middle and low-income countries on its scalability., Results: 78 studies (59 geriatric and 19 palliative) spanning all WHO regions were included. Data were available from 17 739 participants. Nearly half the studies recruited patients with heart failure (n=36) and one-third recruited patients with mixed diagnoses (n=26). Common service elements (≥80% of studies) included collaborative working, ongoing assessment, active patient participation, patient/family education and patient self-management. Effective services incorporated patient engagement, patient goal-driven care and the centrality of patient needs. Stakeholders (n=20) emphasised that wider implementation of such services would require access to skilled, multidisciplinary teams with sufficient resource to meet patients' needs. Identified barriers to scalability included the political and societal will to invest in and prioritise palliative and geriatric care for older people, alongside geographical and socioeconomic factors., Conclusion: Our logic model combines elements of effective services to achieve optimal quality of life and health service use among older people with advanced progressive conditions. The model transcends current best practice in geriatric and palliative care and applies across the care continuum, from prevention of functional decline to end-of-life care., Prospero Registration Number: CRD42020150252., Competing Interests: Competing interests: PO reported that he was an employee of the funding sponsor, the WHO, and was involved in the extraction, analysis and interpretation of data. All other authors have no competing interests., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.)

Background: Hospital admissions among people dying with dementia are common. It is not known whether identification of palliative care needs could help prevent unnecessary admissions., Aim: To examine the proportion of people with dementia identified as having palliative care needs in their last year of life, and the association between identification of needs and primary, community and hospital services in the last 90 days., Design: Retrospective cohort study using Discover, an administrative and clinical dataset from 365 primary care practices in London with deterministic individual-level data linkage to community and hospital records., Setting/participants: People diagnosed with dementia and registered with a general practitioner in North West London (UK) who died between 2016 and 2019. The primary outcome was multiple non-elective hospital admissions in the last 90 days of life. Secondary outcomes included contacts with primary and community care providers. We examined the association between identification of palliative care needs with outcomes., Results: Among 5804 decedents with dementia, 1953 (33.6%) were identified as having palliative care needs, including 1141 (19.7%) identified before the last 90 days of life. Identification of palliative care needs before the last 90 days was associated with a lower risk of multiple hospital admissions (Relative Risk 0.70, 95% CI 0.58-0.85) and more contacts with the primary care practice, community nurses and palliative care teams in the last 90 days., Conclusions: Further investigation of the mechanisms underlying the association between identification of palliative care needs and reduced hospital admissions could help reduce reliance on acute care for this population.

Background: At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality., Methods: Mortality follow-back postal survey., Setting: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco)., Participants: Informal carers (ICrs) of decedents who had received palliative care., Data: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG)., Analysis: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief., Results: We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66-76 h per week from ICrs for 'being on call', 52-55 h for ICrs being with them, 19-21 h for personal care, 17-21 h for household tasks, 15-18 h for medical procedures and 7-10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden., Conclusions: Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.

Background: Serious illness is often characterised by physical/psychological problems, family support needs, and high healthcare resource use. Hospital-based specialist palliative care (HSPC) has developed to assist in better meeting the needs of patients and their families and potentially reducing hospital care expenditure. There is a need for clarity on the effectiveness and optimal models of HSPC, given that most people still die in hospital and also to allocate scarce resources judiciously., Objectives: To assess the effectiveness and cost-effectiveness of HSPC compared to usual care for adults with advanced illness (hereafter patients) and their unpaid caregivers/families., Search Methods: We searched CENTRAL, CDSR, DARE and HTA database via the Cochrane Library; MEDLINE; Embase; CINAHL; PsycINFO; CareSearch; National Health Service Economic Evaluation Database (NHS EED) and two trial registers to August 2019, together with checking of reference lists and relevant systematic reviews, citation searching and contact with experts to identify additional studies., Selection Criteria: We included randomised controlled trials (RCTs) evaluating the impact of HSPC on outcomes for patients or their unpaid caregivers/families, or both. HSPC was defined as specialist palliative care delivered by a palliative care team that is based in a hospital providing holistic care, co-ordination by a multidisciplinary team, and collaboration between HSPC providers and generalists. HSPC was provided to patients while they were admitted as inpatients to acute care hospitals, outpatients or patients receiving care from hospital outreach teams at home. The comparator was usual care, defined as inpatient or outpatient hospital care without specialist palliative care input at the point of entry into the study, community care or hospice care provided outside of the hospital setting., Data Collection and Analysis: We used standard methodological procedures expected by Cochrane. We assessed risk of bias and extracted data. To account for use of different scales across studies, we calculated standardised mean differences (SMDs) with 95% confidence intervals (CIs) for continuous data. We used an inverse variance random-effects model. For binary data, we calculated odds ratio (ORs) with 95% CIs. We assessed the evidence using GRADE and created a 'Summary of findings' table. Our primary outcomes were patient health-related quality of life (HRQoL) and symptom burden (a collection of two or more symptoms). Key secondary outcomes were pain, depression, satisfaction with care, achieving preferred place of death, mortality/survival, unpaid caregiver burden, and cost-effectiveness. Qualitative data was analysed where available., Main Results: We identified 42 RCTs involving 7779 participants (6678 patients and 1101 caregivers/family members). Twenty-one studies were with cancer populations, 14 were with non-cancer populations (of which six were with heart failure patients), and seven with mixed cancer and non-cancer populations (mixed diagnoses). HSPC was offered in different ways and included the following models: ward-based, inpatient consult, outpatient, hospital-at-home or hospital outreach, and service provision across multiple settings which included hospital. For our main analyses, we pooled data from studies reporting adjusted endpoint values. Forty studies had a high risk of bias in at least one domain. Compared with usual care, HSPC improved patient HRQoL with a small effect size of 0.26 SMD over usual care (95% CI 0.15 to 0.37; I 2 = 3%, 10 studies, 1344 participants, low-quality evidence, higher scores indicate better patient HRQoL). HSPC also improved other person-centred outcomes. It reduced patient symptom burden with a small effect size of -0.26 SMD over usual care (95% CI -0.41 to -0.12; I 2 = 0%, 6 studies, 761 participants, very low-quality evidence, lower scores indicate lower symptom burden). HSPC improved patient satisfaction with care with a small effect size of 0.36 SMD over usual care (95% CI 0.41 to 0.57; I 2 = 0%, 2 studies, 337 participants, low-quality evidence, higher scores indicate better patient satisfaction with care). Using home death as a proxy measure for achieving patient's preferred place of death, patients were more likely to die at home with HSPC compared to usual care (OR 1.63, 95% CI 1.23 to 2.16; I 2 = 0%, 7 studies, 861 participants, low-quality evidence). Data on pain (4 studies, 525 participants) showed no evidence of a difference between HSPC and usual care (SMD -0.16, 95% CI -0.33 to 0.01; I 2 = 0%, very low-quality evidence). Eight studies (N = 1252 participants) reported on adverse events and very low-quality evidence did not demonstrate an effect of HSPC on serious harms. Two studies (170 participants) presented data on caregiver burden and both found no evidence of effect of HSPC (very low-quality evidence). We included 13 economic studies (2103 participants). Overall, the evidence on cost-effectiveness of HSPC compared to usual care was inconsistent among the four full economic studies. Other studies that used only partial economic analysis and those that presented more limited resource use and cost information also had inconsistent results (very low-quality evidence). Quality of the evidence The quality of the evidence assessed using GRADE was very low to low, downgraded due to a high risk of bias, inconsistency and imprecision., Authors' Conclusions: Very low- to low-quality evidence suggests that when compared to usual care, HSPC may offer small benefits for several person-centred outcomes including patient HRQoL, symptom burden and patient satisfaction with care, while also increasing the chances of patients dying in their preferred place (measured by home death). While we found no evidence that HSPC causes serious harms, the evidence was insufficient to draw strong conclusions. Although these are only small effect sizes, they may be clinically relevant at an advanced stage of disease with limited prognosis, and are person-centred outcomes important to many patients and families. More well conducted studies are needed to study populations with non-malignant diseases and mixed diagnoses, ward-based models of HSPC, 24 hours access (out-of-hours care) as part of HSPC, pain, achieving patient preferred place of care, patient satisfaction with care, caregiver outcomes (satisfaction with care, burden, depression, anxiety, grief, quality of life), and cost-effectiveness of HSPC. In addition, research is needed to provide validated person-centred outcomes to be used across studies and populations., (Copyright © 2020 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.)

Background: End of life (EoL) care becomes more complex and increasingly takes place in the community, but there is little data on the use of general practice (GP) services to guide care improvement. This study aims to determine the trends and factors associated with GP consultation, prescribing and referral to other care services amongst cancer patients in the last year of life., Methods: A retrospective cohort study of cancer patients who died in 2000-2014, based on routinely collected primary care data (the Clinical Practice Research DataLink, CPRD) covering a representative sample of the population in the United Kingdom. Outcome variables were number of GP consultations (primary), number of prescriptions and referral to other care services (yes vs no) in the last year of life. Explanatory variables included socio-demographics, clinical characteristics and the status of palliative care needs recognised or not. The association between outcome and explanatory variables were evaluated using multiple-adjusted risk ratio (aRR)., Results: Of 68,523 terminal cancer patients, 70% were aged 70+, 75% had comorbidities and 45.5% had palliative care needs recognised. In the last year of life, a typical cancer patient had 43 GP consultations (Standard deviation (SD): 31.7; total = 3,031,734), 71.5 prescriptions (SD: 68.0; total = 5,074,178), and 21(SD: 13.0) different drugs; 58.0% of patients had at least one referral covering all main clinical specialities. More comorbid conditions, prostate cancer and having palliative care needs recognised were associated with more primary care consultations, more prescriptions and a higher chance of referral (aRRs 1.07-2.03). Increasing age was related to fewer consultations (aRRs 0.77-0.96), less prescriptions (aRR 1.09-1.44), and a higher chance of referral (aRRs 1.08-1.16) but less likely to have palliative care needs recognised (aRRs 0.53-0.89)., Conclusions: GPs are very involved in end of life care of cancer patients, most of whom having complex care needs, i.e. older age, comorbidity and polypharmacy. This highlights the importance of enhancing primary palliative care skills among GPs and the imperative of greater integration of primary care with other healthcare professionals including oncologists, palliative care specialists, geriatricians and pharmacists. Research into the potential of deprescribing is warranted. Older patients have poorer access to both primary care and palliative care need to be addressed in future practices.

Background: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access., Aim: The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries., Design: Mortality follow-back survey. Costs were calculated from carers' reported service use and unit costs., Setting: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco)., Participants: Informal carers of decedents who had received palliative care participated in the study., Results: A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly ( F  = 25.79/14.27, p  < 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for > 80% of total care costs; community care 6%-16%, palliative care 1%-15%; 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age (>80 years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction., Conclusion: Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent.

Background: Paediatric life-limiting and life-threatening conditions (life-limiting conditions) place significant strain on children, families and health systems. Given high service use among this population, it is essential that care addresses their main symptoms and concerns., Aim: This study aimed to identify the symptoms, concerns and other outcomes that matter to children with life-limiting conditions and their families in sub-Saharan Africa., Setting and Participants: Cross-sectional qualitative study in Kenya, Namibia, South Africa and Uganda. Children/caregivers of children aged 0-17 years with life-limiting conditions were purposively sampled by age, sex and diagnosis. Children aged 7 and above self-reported; caregiver proxies reported for children below 7 and those aged 7 and above unable to self-report., Results: A total of 120 interviews were conducted with children with life-limiting conditions ( n  = 61; age range: 7-17 years), and where self-report was not possible, caregivers ( n  = 59) of children (age range: 0-17) were included. Conditions included advanced HIV (22%), cancer (19%), heart disease (16%) endocrine, blood and immune disorders (13%), neurological conditions (12%), sickle cell anaemia (10%) and renal disease (8%). Outcomes identified included physical concerns - pain and s ymptom distress; psycho-social concerns - family and social relationships, ability to engage with age-appropriate activities (e.g. play, school attendance); existential concerns - worry about death, and loss of ambitions; health care quality - child- and adolescent-friendly services. Priority psycho-social concerns and health service factors varied by age., Conclusion: This study bridges an important knowledge gap regarding symptoms, concerns and outcomes that matter to children living with life-limiting conditions and their families and informs service development and evaluation.

Background: People with serious mental illness have greater mortality risk than the general population. They experience health care inequalities throughout life; it is not clear if this persists to end of life., Aim: Assess the empirical evidence describing end-of-life care and place of death for people with serious mental illness., Design: A systematic review of original, peer-reviewed research, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Data were analysed using a narrative synthesis approach., Data Sources: Five online databases (Embase, PsycArticles, PsycINFO, Medline, PubMed) and additional sources were searched (without time restriction) for primary research reporting health care utilisation in the last year of life or place of death in adults with serious mental illness., Results: After full-text screening, 23 studies were included. We found studies reporting hospital admissions, emergency department care, palliative care, and general practitioner (GP) visits at end of life. We found conflicting evidence for the association between serious mental illness and end-of-life care, although different patient groups, settings and measures were used across studies. People with serious mental illness were more likely to die in care homes than the general population. There were no patterns for other places of death., Conclusions: The evidence was sparse and heterogeneous, demonstrating variability in patterns and reporting of health care use and with little consensus on where people with serious mental illness are likely to die. Given that people with serious mental illness have increased mortality risk, this gap in the knowledge around end-of-life care outcomes is concerning; this area of research needs further development.

Background: Global annual deaths are rising. It is essential to examine where future deaths may occur to facilitate decisions regarding future service provision and resource allocation., Aims: To project where people will die from 2017 to 2040 in an ageing country with advanced integrated palliative care, and to prioritise recommendations based on these trends., Methods: Population-based trend analysis of place of death for people that died in Scotland (2004-2016) and projections using simple linear modelling (2017-2040); Transparent Expert Consultation to prioritise recommendations in response to projections., Results: Deaths are projected to increase by 15.9% from 56,728 in 2016 (32.8% aged 85+ years) to 65,757 deaths in 2040 (45% aged 85+ years). Between 2004 and 2016, proportions of home and care home deaths increased (19.8-23.4% and 14.5-18.8%), while the proportion of hospital deaths declined (58.0-50.1%). If current trends continue, the numbers of deaths at home and in care homes will increase, and two-thirds will die outside hospital by 2040. To sustain current trends, priorities include: 1) to increase and upskill a community health and social care workforce through education, training and valuing of care work; 2) to build community care capacity through informal carer support and community engagement; 3) to stimulate a realistic public debate on death, dying and sustainable funding., Conclusion: To sustain current trends, health and social care provision in the community needs to grow to support nearly 60% more people at the end-of-life by 2040; otherwise hospital deaths will increase.

Background: transitions between care settings near the end-of-life for people with dementia can be distressing, lead to physical and cognitive deterioration, and may be avoidable., Objective: to investigate determinants of end-of-life hospital transitions, and association with healthcare use, among people with dementia., Design: retrospective cohort study., Setting: electronic records from a mental health provider in London, linked to national mortality and hospital data., Subjects: people with dementia who died in 2007-2016., Methods: end-of-life hospital transitions were defined as: multiple admissions in the last 90 days (early), or any admission in the last three days of life (late). Determinants were assessed using logistic regression., Results: of 8,880 people, 1,421 (16.0%) had at least one end-of-life transition: 505 (5.7%) had early, 788 (8.9%) late, and 128 (1.5%) both types. Early transitions were associated with male gender (OR 1.33, 95% CI 1.11-1.59), age (>90 vs <75 years OR 0.69, 95% CI 0.49-0.97), physical illness (OR 1.52, 95% CI 1.20-1.94), depressed mood (OR 1.49, 95% CI 1.17-1.90), and deprivation (most vs least affluent quintile OR 0.58, 95% CI 0.37-0.90). Care home residence was associated with fewer early (OR 0.63, 95% CI 0.53 to 0.76) and late (OR 0.80, 95% CI 0.65 to 0.97) transitions. Early transitions were associated with more hospital admissions throughout the last year of life compared to those with late and no transitions (mean 4.56, 1.89, 1.60; P < 0.001)., Conclusions: in contrast to late transitions, early transitions are associated with higher healthcare use and characteristics that are predictable, indicating potential for prevention., (© The Author(s) 2019. Published by Oxford University Press on behalf of the British Geriatrics Society.)

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., Competing Interests: The authors have declared that no competing interests exist.

Background: Prioritisation of end-of-life care by policymakers has been the subject of extensive rhetoric, but little scrutiny. In England, responsibility for improving health and care lies with 152 regional Health and Wellbeing Boards., Aim: To understand the extent to which Health and Wellbeing Boards have identified and prioritised end-of-life care needs and their plans for improvement., Design: Qualitative documentary analysis of Health and Wellbeing Strategies. Summative content analysis to quantify key concepts and identify themes., Data Sources: Strategies were identified from Local Authority web pages and systematically searched to identify relevant content., Results: In total, 150 strategies were identified. End-of-life care was mentioned in 78 (52.0%) and prioritised in 6 (4.0%). Four themes emerged: (1) clinical context - in 43/78 strategies end-of-life care was mentioned within a specific clinical context, most often ageing and dementia; (2) aims and aspirations - 31 strategies identified local needs and/or quantifiable aims, most related to the place of death; (3) narrative thread - the connection between need, aim and planned intervention was disjointed, just six strategies included all three components; and (4) focus of evidence - where cited, evidence related to evidence of need, not evidence for effective interventions., Conclusion: Half of Health and Wellbeing Strategies mention end-of-life care, few prioritise it and none cite evidence for effective interventions. The absence of connection between need, aim and intervention is concerning. Future research should explore whether and how strategies have impacted on local populations.

Background: Patient empowerment, defined as 'a process through which people gain greater control over decisions and actions affecting their health' (World Health Organization) is a key theme within global health and social care strategies. The benefits of incorporating empowerment strategies in care are well documented, but little is known about their application or impact for patients with advanced, life-limiting illness(s)., Aim: To identify and synthesise the international evidence on patient empowerment for adults with advanced, life-limiting illness(s)., Design: Systematic review (PROSPERO no. 46113) with critical interpretive synthesis methodology., Data Sources: Five databases (MEDLINE, Embase, CINHAL, PsycINFO and Cochrane) were searched from inception to March 2018. Grey literature and reference list/citation searches of included papers were undertaken., Inclusion Criteria: empirical research involving patients with advanced life-limiting illness including descriptions of, or references to, patient empowerment within the study results., Results: In all, 13 papers met inclusion criteria. Two qualitative studies explored patient empowerment as a study objective. Six papers evaluated interventions, referencing patient empowerment as an incidental outcome. The following themes were identified from the interpretive synthesis: self-identity, personalised knowledge in theory and practice, negotiating personal and healthcare relationships, acknowledgement of terminal illness, and navigating continued losses., Conclusion: There are features of empowerment, for patients with advanced life-limiting illness distinct to those of other patient groups. Greater efforts should be made to progress the empowerment of patients nearing the end of their lives. We propose that the identified themes may provide a useful starting point to guide the assessment of existing or planned services and inform future research.

Background: Methods to improve care, trust and communication are important in acute hospitals. Complex interventions aimed at improving care of patients approaching the end of life are increasingly common. While evaluating outcomes of complex interventions is essential, exploring healthcare professionals' perceptions is also required to understand how they are interpreted; this can inform training, education and implementation strategies to ensure fidelity and consistency in use., Aim: To explore healthcare professionals' perceptions of using a complex intervention (AMBER care bundle) to improve care for people approaching the end of life and their understandings of its purpose within clinical practice., Design: Qualitative study of healthcare professionals. Analysis informed by Medical Research Council guidance for process evaluations., Setting/participants: A total of 20 healthcare professionals (12 nursing and 8 medical) interviewed from three London tertiary National Health Service hospitals. Healthcare professionals recruited from palliative care, oncology, stroke, health and ageing, medicine, neurology and renal/endocrine services., Results: Three views emerged regarding the purpose of a complex intervention towards the end of life: labelling/categorising patients, tool to change care delivery and serving symbolic purpose indirectly affecting behaviours of individuals and teams. All impact upon potential utility of the intervention. Participants described the importance of training and education alongside implementation of the intervention. However, adequate exposure to the intervention was essential to witness its potential added value or embed it into practice., Conclusion: Understanding differing interpretations of complex interventions is essential. Consideration of ward composition, casemix and potential exposure to the intervention is critical for their successful implementation.

Introduction: A fall in hospital deaths in dementia has been interpreted as indicating an improvement in end-of-life care. Whether other indicators of quality of end-of-life care, such as emergency department (ED) attendance, show a similar trend is unclear., Methods: Retrospective cohort study using electronic medical records from a large mental health care provider, linked to national mortality and hospital use data (2008-2013)., Results: Of 4867 patients, 78.6% (3824) had at least one ED attendance during their last year of life (mean 2.13, standard deviation 2.34, range 0-54). ED attendance increased over the time period (incidence rate ratio 1.62, 95% confidence interval 1.46-1.80 for 2012-2013 compared with 2008-2009)., Discussion: ED attendance in the last year of life for people with dementia is common and is increasing. Policy makers must pay attention to a broader range of indicators of poor end-of-life care alongside the place of death., (Copyright © 2017 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Achieving choice is proposed as a quality marker. But little is known about what influences preferences especially among older adults. We aimed to determine and compare, across three countries, factors associated with preferences for place of death and treatment, and actual site of death., Methods: We recruited adults aged ≥65-years from hospital-based multiprofessional palliative care services in London, Dublin, New York, and followed them for >17 months. All services offered consultation on hospital wards, support for existing clinical teams, outpatient services and received funding from their National Health Service and/or relevant Insurance reimbursements. The New York service additionally had 10 inpatient beds. All worked with and referred patients to local hospices. Face-to-face interviews recorded most and least preferred place of death, treatment goal priorities, demographic and clinical information using validated questionnaires. Multivariable and multilevel analyses assessed associated factors., Results: One hundred and thirty eight older adults (64 London, 59 Dublin, 15 New York) were recruited, 110 died during follow-up. Home was the most preferred place of death (77/138, 56%) followed by inpatient palliative care/hospice units (22%). Hospital was least preferred (35/138, 25%), followed by nursing home (20%) and home (16%); hospice/palliative care unit was rarely least preferred (4%). Most respondents prioritised improving quality of life, either alone (54%), or equal with life extension (39%); few (3%) chose only life extension. There were no significant differences between countries. Main associates with home preference were: cancer diagnosis (OR 3.72, 95% CI 1.40-9.90) and living with someone (OR 2.19, 1.33-3.62). Adults with non-cancer diagnoses were more likely to prefer palliative care units (OR 2.39, 1.14-5.03). Conversely, functional independence (OR 1.05, 1.04-1.06) and valuing quality of life (OR 3.11, 2.89-3.36) were associated with dying at home. There was a mismatch between preferences and achievements - of 85 people who preferred home or a palliative care unit, 19 (25%) achieved their first preference., Conclusion: Although home is the most common first preference, it is polarising and for 16% it is the least preferred. Inpatient palliative care unit emerges as the second most preferred place, is rarely least preferred, and yet was often not achieved for those who wanted to die there. Factors affecting stated preferences and met preferences differ. Available services, notably community support and palliative care units, require expansion. Contrasting actual place of death with capacity for meeting patient and family needs may be a better quality indicator than simply 'achieved preferences'.

Context: End-of-life care (EoLC) communication skills training for generalist palliative care providers is recommended in policy guidance globally. Although many training programs now exist, there has been no comprehensive evidence synthesis to inform future training delivery and evaluation., Objectives: To identify and appraise how EoLC communication skills training interventions for generalist palliative care providers are developed, delivered, evaluated, and reported., Methods: Systematic review. Ten electronic databases (inception to December 2015) and five relevant journals (January 2004 to December 2015) were searched. Studies testing the effectiveness of EoLC communication skills training for generalists were included. Two independent authors assessed study quality. Descriptive statistics and narrative synthesis are used to summarize the findings., Results: From 11,441 unique records, 170 reports were identified (157 published, 13 unpublished), representing 160 evaluation studies of 153 training interventions. Of published papers, eight were of low quality, 108 medium, and 41 high. Few interventions were developed with service user involvement (n = 7), and most were taught using a mixture of didactics (n = 123), reflection and discussion (n = 105), and role play (n = 86). Evaluation designs were weak: <30% were controlled, <15% randomized participants. Over half (n = 85) relied on staff self-reported outcomes to assess effectiveness, and 49% did not cite psychometrically validated measures. Key information (e.g., training duration, participant flow) was poorly reported., Conclusions: Despite a proliferation of EoLC communication skills training interventions in the literature, evidence is limited by poor reporting and weak methodology. Based on our findings, we present a CONSORT statement supplement to improve future reporting and encourage more rigorous testing., (Copyright © 2017 The Author(s). Published by Elsevier Inc. All rights reserved.)

Background: Strategies in many countries have sought to improve palliative care and reduce hospital deaths for non-cancer patients, but their effects are not evaluated. We aimed to determine the trends and factors associated with dying in hospital in two common progressive respiratory diseases, and the impact of a national end of life care (EoLC) strategy to reduce deaths in hospital., Methods: This population-based observational study linked death registration data for people in England dying from chronic obstructive pulmonary disease (COPD) or interstitial pulmonary diseases (IPD). We plotted age- and sex-standardised trends, assessed during the pre-strategy (2001-2004), first strategy phase (2004-2008), and strategy intensification (2009-2014) periods, and identified factors associated with hospital death using multiple adjusted proportion ratios (PRs)., Results: Over 14 years, 380,232 people died from COPD (334,520) or IPD (45,712). Deaths from COPD and IPD increased by 0.9% and 9.2% annually, respectively. Death in hospital was most common (67% COPD, 70% IPD). Dying in hospice was rare (0.9% COPD, 2.9% IPD). After a plateau in 2004-2005, hospital deaths fell (PRs 0.92-0.94). Co-morbidities and deprivation independently increased the chances of dying in hospital, with larger effects in IPD (PRs 1.01-1.55) than COPD (PRs 1.01-1.39) and dose-response gradients. The impact of multimorbidity increased over time; hospital deaths did not fall for people with two or more co-morbidities in COPD, nor one or more in IPD. Living in rural areas (PRs 0.94-0.94) or outside London (PRs, 0.89-0.98) reduced the chances of hospital death. In IPD, increased age reduced the likelihood of hospital death (PR 0.81, ≥ 85 versus ≤ 54 years); divergently, in COPD, being aged 65-74 years was associated with increased hospital deaths (PR 1.13, versus ≤ 54 years). The independent effects of sex and marital status differed for COPD versus IPD (PRs 0.89-1.04); in COPD, hospital death was associated with being married., Conclusions: The EoLC strategy appeared to have contributed to tangible reductions in hospital deaths, but did not reach people with multimorbidity and this gap widened over time. Integrating palliative care earlier in the disease trajectory especially in deprived areas and cities, and where multimorbidity is present, should be boosted, taking into account the different demographic factors in COPD and IPD.

Background: Geographical accessibility is important in accessing healthcare services. Measuring it has evolved alongside technological and data analysis advances. High correlations between different methods have been detected, but no comparisons exist in the context of palliative and end of life care (PEoLC) studies. To assess how geographical accessibility can affect PEoLC, selection of an appropriate method to capture it is crucial. We therefore aimed to compare methods of measuring geographical accessibility of decedents to PEoLC-related facilities in South London, an area with well-developed SPC provision., Methods: Individual-level death registration data in 2012 (n = 18,165), from the Office for National Statistics (ONS) were linked to area-level PEoLC-related facilities from various sources. Simple and more complex measures of geographical accessibility were calculated using the residential postcodes of the decedents and postcodes of the nearest hospital, care home and hospice. Distance measures (straight-line, travel network) and travel times along the road network were compared using geographic information system (GIS) mapping and correlation analysis (Spearman rho)., Results: Borough-level maps demonstrate similarities in geographical accessibility measures. Strong positive correlation exist between straight-line and travel distances to the nearest hospital (rho = 0.97), care home (rho = 0.94) and hospice (rho = 0.99). Travel times were also highly correlated with distance measures to the nearest hospital (rho range = 0.84-0.88), care home (rho = 0.88-0.95) and hospice (rho = 0.93-0.95). All correlations were significant at p < 0.001 level., Conclusions: Distance-based and travel-time measures of geographical accessibility to PEoLC-related facilities in South London are similar, suggesting the choice of measure can be based on the ease of calculation.

Objectives: To identify factors associated with end-of-life (EoL) transition from usual place of care to the hospital as place of death for people aged 75 and older., Design: Population-based mortality follow-back survey., Setting: Deaths over 6 months in 2012 in two unitary authorities in England covering 800 square miles with more than 1 million residents., Participants: A random sample of people aged 75 and older who died in a care home or hospital and all those who died at home or in a hospice unit (N = 882). Cases were identified from death registrations. The person who registered the death (a relative for 98.9%) completed the survey., Measurements: The main outcome was EoL transition to the hospital as place of death versus no EoL transition to the hospital. Multivariable modified Poisson regression was used to examine factors (illness, demographic, environmental) related to EoL transition to the hospital., Results: Four hundred forty-three (50.2%) individuals responded, describing the care of the people who died. Most died from nonmalignant conditions (76.3%) at a mean age of 87.4 ± 6.4. One hundred forty-six (32.3%) transitioned to the hospital and died there. Transition was more likely for individuals with respiratory disease than for those with cancer (prevalence ratio (PR) = 2.07, 95% confidence interval (CI) = 1.42-3.01) and for people with severe breathlessness (PR = 1.96, 95% CI = 1.12-3.43). Transition was less likely if EoL preferences had been discussed with a healthcare professional (PR = 0.60, 95% CI = 0.42-0.88) and when there was a key healthcare professional (PR = 0.74, 95% CI = 0.58-0.95)., Conclusion: To reduce EoL transition to the hospital for older people, there needs to be improved management of breathlessness in the community and better access to a key healthcare professional skilled in coordinating care, communication, facilitating complex discussions, and in planning for future care., (© 2016, The Authors. The Journal of the American Geriatrics Society published by Wiley Periodicals, Inc. on behalf of The American Geriatrics Society.)

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.

Palliative and end of life care is essential to healthcare systems worldwide, yet a minute proportion of research funding is spent on palliative and end of life care research. Routinely collected health and social care data provide an efficient and useful opportunity for evaluating and improving care for patients and families. There are excellent examples of routine data research in palliative and end of life care, but routine data resources are widely underutilised. We held four workshops on using routinely collected health and social care data in palliative and end of life care. Researchers presented studies from the UK, USA and Europe. The aim was to highlight valuable examples of work with routine data including work with death registries, hospital activity records, primary care data and specialist palliative care registers. This article disseminates that work, describes the benefits of routine data research and identifies major challenges for the future use of routine data, including; access to data, improving data linkage, and the need for more palliative and end of life care specific data., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

Background: Many patients with cancer experience aggressive care towards the end of life (EOL) despite evidence of an association with poor outcomes such as prolonged pain and overall dissatisfaction with care., Purpose: To investigate socio-demographic, clinical and community health care service factors associated with aggressive EOL cancer care., Methods: An analysis of pooled data from two mortality follow-back surveys was performed. Aggressive EOL care was defined as greater than or equal to one of the following indicators occurring during the last 3 months of life: greater than or equal to two emergency department visits, ≥30 days in hospital and death in hospital., Results: Of the 681 included patients, 50.1% were men and mean age at death was 75 years. The majority of patients (59.3%, 95% confidence interval (CI) 55.6-63.0%) experienced at least one indicator of aggressive EOL care: 29.7% experienced greater than or equal to two ED visits, 17.1% spent ≥30 days in hospital and 37.9% died in hospital. Patients with prostate or haematological cancer were more likely to experience aggressive EOL care (adjusted odds ratio (AOR) 4.36, 95% CI 1.39-13.70, and 4.16, 95% CI 1.38-12.47, respectively, reference group lung cancer). Patients who received greater than five general practitioner (GP) home visits (AOR 0.37, 95% CI 0.17-0.82, reference group no GP visits) or had contact with district nursing (AOR 0.48, 95% CI 0.28-0.83, reference group no contact) or contact with community palliative care services (AOR 0.27, 95% CI 0.15-0.49, reference group no contact) were less likely to experience aggressive EOL care. No association was found between aggressive EOL care and patients' age, gender, marital, financial or health status., Conclusions: Community health care services, in particular contact with community palliative care, are associated with a significant reduction in the odds of cancer patients receiving aggressive EOL care. Expansion of such services may help address the current capacity crises faced by many acute health care systems.

Objective: Multimorbidity is increasingly common in the last year of life, and associated with frequent hospital admissions. The epidemiology is well described, but patient perspectives are less understood. We report the experiences and perceptions of people with advanced multimorbidity to inform improvements in palliative and end-of-life care., Design: Multicentre study including serial, multiperspective interviews with patients and their family carers; an interpretive analysis of experiences and understanding of living with advanced multimorbidity., Participants: We recruited patients and their family carers using established UK clinical guidance for the identification of people anticipated to be in their last year of life., Settings: An acute admissions unit in a Scottish regional hospital; a large English general practice; a London respiratory outpatient clinic., Results: We analysed 87 interviews with 37 patients and 17 carers. They struggled with multiple changing medications, multiple services better aligned with single conditions such as cancer, and a lack of coordination and continuity of care. Family carers spoke of physical, mental and emotional exhaustion and feeling undervalued by professionals. Patients and carers frequently saw deteriorating health as part of 'growing old'. Many used a 'day-to-day' approach to self-management that hindered engagement with advance care planning and open discussions about future care. 'Palliative care' and 'dying soon' were closely related concepts for many patients, carers and professionals, so rarely discussed., Conclusions: Patients with advanced multimorbidity received less care than their illness burden would appear to merit. Some people did restrict their interactions with care providers to preserve autonomy, but many had a limited understanding of their multiple conditions, medications and available services, and found accessing support impersonal and challenging. Greater awareness of the needs associated with advanced multimorbidity and the coping strategies adopted by these patients and carers is necessary, together with more straightforward access to appropriate care., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

Background: Examination of factors independently associated with participation in mortality followback surveys is rare, even though these surveys are frequently used to evaluate end-of-life care. We aimed to identify factors associated with 1) participation versus non-participation and 2) provision of an active refusal versus a silent refusal; and systematically examine reasons for refusal in a population-based mortality followback survey., Methods: Postal survey about the end-of-life care received by 1516 people who died from cancer (aged ≥18), identified through death registrations in London, England (response rate 39.3%). The informant of death (a relative in 95.3% of cases) was contacted 4-10 months after the patient died. We used multivariate logistic regression to identify factors associated with participation/active refusals and content analysis to examine refusal reasons provided by 205 nonparticipants., Findings: The odds of partaking were higher for patients aged 90+ (AOR 3.48, 95%CI: 1.52-8.00, ref: 20-49yrs) and female informants (AOR 1.70, 95%CI: 1.33-2.16). Odds were lower for hospital deaths (AOR 0.62, 95%CI: 0.46-0.84, ref: home) and proxies other than spouses/partners (AORs 0.28 to 0.57). Proxies of patients born overseas were less likely to provide an active refusal (AOR 0.49; 95% CI: 0.32-0.77). Refusal reasons were often multidimensional, most commonly study-related (36.0%), proxy-related and grief-related (25.1% each). One limitation of this analysis is the large number of nonparticipants who did not provide reasons for refusal (715/920)., Conclusions: Our survey better reached proxies of older patients while those dying in hospitals were underrepresented. Proxy characteristics played a role, with higher participation from women and spouses/partners. More information is needed about the care received by underrepresented groups. Study design improvements may guide future questionnaire development and help develop strategies to increase response rates.

Background: Stronger generalist end-of-life care at home for people with cancer is called for but the quality of end-of-life care delivered by general practitioners has been questioned., Aim: To determine the degree of and factors associated with bereaved relatives' satisfaction with home end-of-life care delivered by general practitioners to cancer patients., Design: Population-based mortality followback survey., Setting/participants: Bereaved relatives of people who died of cancer in London, United Kingdom (identified from death registrations in 2009-2010), were invited to complete a postal questionnaire surveying the deceased's final 3 months of life., Results: Questionnaires were completed for 596 decedents of whom 548 spent at least 1 day at home in the last 3 months of life. Of the respondents, 55% (95% confidence interval: 51%-59%) reported excellent/very good home care by general practitioners, compared with 78% (95% confidence interval: 74%-82%) for specialist palliative care providers and 68% (95% confidence interval: 64%-73%) for district/community/private nurses. The odds of high satisfaction (excellent/very good) with end-of-life care by general practitioners doubled if general practitioners made three or more compared with one or no home visits in the patient's last 3 months of life (adjusted odds ratio: 2.54 (95% confidence interval: 1.52-4.24)) and halved if the patient died at hospital rather than at home (adjusted odds ratio: 0.55 (95% confidence interval: 0.31-0.998))., Conclusion: There is considerable room for improvement in the satisfaction with home care provided by general practitioners to terminally ill cancer patients. Ensuring an adequate offer of home visits by general practitioners may help to achieve this goal., (© The Author(s) 2015.)

Background: Studies show that most patients with advanced cancer prefer to die at home. However, not all have equal chances and the evidence is unclear on whether dying at home is better. This study aims to determine the association between place of death, health services used, and pain, feeling at peace, and grief intensity., Methods: Mortality follow-back study of 352 cancer patients who died in hospital (n = 177) or at home (n = 175) in London, UK. Bereaved relatives identified from death registrations completed a questionnaire including validated measures of patient's pain and peace in the last week of life and their own grief intensity. We determined factors influencing death at home, and associations between place of death and pain, peace, and grief., Results: Where people died was, for most (80%), the place where they lived during their last week of life. Four factors explained >91% of home deaths: patient's preference, relative's preference, home palliative care, or district/community nursing. The propensity of death at home also increased when the relative was aware of incurability and the patient discussed his/her preferences with family. Dying in hospital was associated with more hospital days, fewer general practitioner (GP) home visits, and fewer days taken off work by relatives. Adjusting for confounders, patients who died at home experienced similar pain levels but more peace in their last week of life (ordered log odds ratio 0.69, P = 0.007). Grief was less intense for their relatives than for those of patients who died in hospital (β, -0.15 around time of death and -0.14 at questionnaire completion, P = 0.02)., Conclusion: The study suggests that dying at home is better than hospital for peace and grief, but requires a discussion of preferences, GP home visits, and relatives to be given time off work., Trial Registration: National Institute of Health Research (NIHR) Clinical Research Network Portfolio. UKCRN7041.

Background: Because of demographic changes of an aging society, palliative care is becoming increasingly important. It is therefore necessary to evaluate preferences at the end of life at an early stage to meet the needs and requests of future patients., Objectives: The aim of this study was to find out preferences in a theoretical scenario ("If you developed a serious medical condition such as cancer and you had less than a year to live…") regarding the desired involvement in decision-making at the end of life and the preferred place of death., Materials and Methods: As part of the international PRISMA project, a representative telephone survey was carried out in Germany., Results: A total of 1,363 Germans took part in the survey (response rate 29.0 %, 47.1 ± 15.7 years, 42 % male). 90.8 % wanted to make their own decisions with regard to end-of-life care, which was most important for people with higher education. 83.3 % wanted to predetermine decisions by means of an advance directive in case they are no longer able to make them at the time. This was again more important for individuals with higher education and for older subjects (≥ 65 years). The preferred place of death was their own home (63.3 %), and the least preferred place for death was in hospital in 48.2 %. In particular, women did not want to die in a hospital., Conclusion: These results should be considered when planning health care structures to meet the wishes of people at the end of their life, in particular to strengthen the importance of patient provision and the desire for their own home to be the preferred place to die.

Background: Clinical uncertainty is emotionally challenging for patients and carers and creates additional pressures for those clinicians in acute hospitals. The AMBER care bundle was designed to improve care for patients identified as clinically unstable, deteriorating, with limited reversibility and at risk of dying in the next 1-2 months., Aim: To examine the experience of care supported by the AMBER care bundle compared to standard care in the context of clinical uncertainty, deterioration and limited reversibility., Design: A comparative observational mixed-methods study using semi-structured qualitative interviews and a followback survey., Setting/participants: Three large London acute tertiary National Health Service hospitals. Nineteen interviews with 23 patients and carers (10 supported by AMBER care bundle and 9 standard care). Surveys completed by next of kin of 95 deceased patients (59 AMBER care bundle and 36 standard care)., Results: The AMBER care bundle was associated with increased frequency of discussions about prognosis between clinicians and patients (χ(2) = 4.09, p = 0.04), higher awareness of their prognosis by patients (χ(2) = 4.29, p = 0.04) and lower clarity in the information received about their condition (χ(2) = 6.26, p = 0.04). Although the consistency and quality of communication were not different between the two groups, those supported by the AMBER care bundle described more unresolved concerns about caring for someone at home., Conclusion: Awareness of prognosis appears to be higher among patients supported by the AMBER care bundle, but in this small study this was not translated into higher quality communication, and information was judged less easy to understand. Adequately powered comparative evaluation is urgently needed., (© The Author(s) 2015.)

Background: Despite being widely used, research into the effectiveness of the Liverpool Care of the Dying Pathway (LCP) and associated cases of malpractice does not match dissemination. No study exists focusing on concerns voiced by professionals., Aim: To explore the views of professionals who, during the hospital implementation of the Italian version of the Liverpool Care of the Dying Pathway (LCP-I), voiced or showed concerns towards it., Design: A qualitative study nested within the LCP-I randomized cluster trial, with semi-structured interviews analysed using thematic analysis., Setting and Participants: Six nurses and five physicians from six out of the eight hospital wards who completed the LCP-I implementation were interviewed. Eligibility criteria were having taken part in all steps of the LCP-I Programme, voiced or somehow shown concerns, or failed to fully engage with the implementation process., Results: A total of 12 categories were identified, referring to four topics: the Implementation Programme, the LCP-I clinical documentation, the hospital environment and the educational and professional background of hospital healthcare staff. Issues raised by participants concerned both 'real' characteristics of the LCP-I and a misinterpretation of the LCP-I approach and clinical documentation. Furthermore, difficulties were reported which were not linked to the Programme but rather to end-of-life care., Conclusion: This study provides insights into the experience of professionals with negative opinions of or concerns with the LCP-I. A more comprehensive approach to professional training in palliative care is needed and may envisage the development of new interventions aimed at improving the quality of care throughout the illness trajectory., (© The Author(s) 2015.)

Background: Care homes are increasingly becoming places where people spend the final stages of their lives and eventually die. This trend is expected to continue due to population ageing, yet little is known about public preferences regarding this setting. As part of a larger study examining preferences and priorities for end of life care, we investigated the extent to which care homes are chosen as the least preferred place of death, and the factors associated with this negative preference., Methods: We conducted a cross-sectional telephone survey among 9,344 adults from random private households in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. We asked participants where they would least prefer to die in a situation of serious illness with less than one year to live. Multivariate binary logistic regressions were used to identify factors associated with choosing care homes as the least preferred place of death in each country., Results: Care homes were the most frequently mentioned least preferred place of death in the Netherlands (41.5%), Italy and Spain (both 36.7%) and the second most frequent in England (28.0%), Portugal (25.8%), Germany (23.7%) and Flanders (18.9%). Only two factors had a similar and significant effect on the least preferred place of death in more than one country. In Germany and the Netherlands those doing housework were less likely to choose care homes as their least preferred place (AOR 0.72; 95% CI:0.54-0.96 and AOR 0.68; 95% CI:0.52-0.90 respectively), while those born in the country where the survey took place were more likely to choose care homes (AOR 1.77; 95% CI:1.05-2.99 and AOR 1.74; 95% CI:1.03-2.95 respectively). Experiences of serious illness, death and dying were not associated with the preference., Conclusions: Our results suggest it might be difficult to promote care homes as a good place to die. This is an urgent research area in order to meet needs and preferences of a growing number of older people with chronic, debilitating conditions across Europe. From a research perspective and in order to allow people to be cared for and die where they wish, our findings highlight the need to build more in depth evidence on reasons underlying this negative preference.

Background: To provide effective palliative care in different settings, it is important to understand and identify the sources of dignity-related distress experienced by people nearing the end of life., Aim: To describe and compare the sources of dignity-related distress reported by cancer patients and care home residents., Design: Secondary analysis of merged data. Participants completed the Patient Dignity Inventory (assessing 25 sources of dignity-related distress) and measures of quality of life and depression., Setting/participants: A total of 45 adult patients with advanced cancer referred to hospital-based palliative care teams in London, United Kingdom, and 60 residents living in one of 15 care homes in London., Results: Care home residents were older and had poorer functioning. Both groups reported a wide range of dignity-related problems. Although the number or problems reported on the Patient Dignity Inventory was similar for the two groups (mean (standard deviation): 5.9 (5.5) for cancer patients and 4.1 (4.3) for care home residents, p = 0.07), there was a tendency for more cancer patients to report some existential problems. Experiencing physically distressing symptoms and functional limitations were prevalent problems for both groups. Patient Dignity Inventory problems were associated with poorer performance status and functioning for residents, with age and cognitive impairment for cancer patients and with poorer quality of life and depression for both groups., Conclusion: Although characteristics of the samples differed, similarities in the dignity-related problems reported by cancer patients and care home residents support research suggesting a common pathway towards death for malignant and non-malignant disease. A wider understanding of the sources of dignity-related distress would help clinicians provide more effective end-of-life care., (© The Author(s) 2014.)

Background: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness., Methods: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, The Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes., Results: Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support., Conclusions: Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within- and between-country variance; establish standards for training, education and service delivery., (© The Author 2013. Published by Oxford University Press on behalf of the European Public Health Association.)

Background: Ageing is a growing issue for people from UK black, Asian and minority ethnic (BAME) groups. The health experiences of these groups are recognised as a 'tracer' to measure success in end of life patient-preferred outcomes that includes place of death (PoD)., Aim: To examine patterns in PoD among BAME groups who died of cancer., Material and Methods: Mortality data for 93,375 cancer deaths of those aged ≥65 years in London from 2001-2010 were obtained from the UK Office for National Statistics (ONS). Decedent's country of birth was used as a proxy for ethnicity. Linear regression examined trends in place of death across the eight ethnic groups and Poisson regression examined the association between country of birth and place of death., Results: 76% decedents were born in the UK, followed by Ireland (5.9%), Europe(5.4%) and Caribbean(4.3%). Most deaths(52.5%) occurred in hospital, followed by home(18.7%). During the study period, deaths in hospital declined with an increase in home deaths; trend for time analysis for those born in UK(0.50%/yr[0.36-0.64%]p<0.001), Europe (1.00%/yr[0.64-1.30%]p<0.001), Asia(1.09%/yr[0.94-1.20%]p<0.001) and Caribbean(1.03%/yr[0.72-1.30%]p<0.001). However, time consistent gaps across the geographical groups remained. Following adjustment hospital deaths were more likely for those born in Asia(Proportion ratio(PR)1.12[95%CI1.08-1.15]p<0.001) and Africa(PR 1.11[95%CI1.07-1.16]p<0.001). Hospice deaths were less likely for those born in Asia(PR 0.73 [0.68-0.80] p<0.001), Africa (PR 0.83[95%CI0.74-0.93]p<0.001), and 'other' geographical regions (PR0.90[95% 0.82-0.98]p<0.001). Home deaths were less likely for those born in the Caribbean(PR0.91[95%CI 0.85-0.98]p<0.001)., Conclusions: Location of death varies by country of birth. BAME groups are more likely to die in a hospital and less likely to die at home or in a hospice. Further investigation is needed to determine whether these differences result from patient-centred preferences, or other environment or service-related factors. This knowledge will enable strategies to be developed to improve access to relevant palliative care and related services, where necessary.

Background: Care coordination is defined as good communication between professionals to enable access to services based on need., Aims: To explore patients' experience of care coordination in order to inform current debates on how best to coordinate care and deliver services in end-of-life for patients with lung cancer and those with chronic obstructive pulmonary disease (COPD)., Methods: A qualitative study involving serial interviews was performed in 18 patients recruited from three hospital outpatient clinics situated in a hospital. Interviews were transcribed verbatim and data were analysed thematically., Results: Data comprised 38 interviews. Patients experiencing services related to lung cancer reported good access enabled by the involvement of a keyworker. This contrasted with COPD patients' experiences of services. The keyworker coordinated care between and within clinical settings, referred patients to community palliative care services, helped them with financial issues, and provided support., Conclusions: For patients with lung cancer, the keyworker's role augmented access to various services and enabled care based on their needs. The experiences of patients with COPD highlight the importance of providing a keyworker for this group of patients in both secondary and primary care.

Patients with cancer frequently suffer from debilitating physical symptoms and psychological distress, particularly at the end of life. Interventions to help alleviate these problems are often complex and multifactorial. Palliative care services and therapeutic interventions have developed in a variable manner, often with limited evaluation of clinical effectiveness and affordability, resulting in a relatively weak evidence base. The health care provided to patients with advanced-stage cancer does not always correlate with what is known about their preferences for care. In this Review, we discuss the preferences of patients with cancer regarding their end of life care, including the importance of early provision of palliative care, and the central role of advance care planning in meeting patients' preferences. It has been shown that many patients with cancer wish to die at home. We discuss the factors that contribute to the place of death, including environmental factors, disease-specific issues, and the availability of resources. There has been a recent upward trend in the number of patients with cancer who die in their preferred place of care, and important contributors--such as community palliative care, advance care planning, and improvements in palliative care services as a result of robust research studies--are considered.

Background: Health-care costs are growing, with little population-based data about people's priorities for end-of-life care, to guide service development and aid discussions., Aim: We examined variations in people's priorities for treatment, care and information across seven European countries., Design: Telephone survey of a random sample of households; we asked respondents their priorities if 'faced with a serious illness, like cancer, with limited time to live' and used multivariable logistic regressions to identify associated factors., Setting/participants: Members of the general public aged ≥ 16 years residing in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain., Results: In total, 9344 individuals were interviewed. Most people chose 'improve quality of life for the time they had left', ranging from 57% (95% confidence interval: 55%-60%, Italy) to 81% (95% confidence interval: 79%-83%, Spain). Only 2% (95% confidence interval: 1%-3%, England) to 6% (95% confidence interval: 4%-7%, Flanders) said extending life was most important, and 15% (95% confidence interval: 13%-17%, Spain) to 40% (95% confidence interval: 37%-43%, Italy) said quality and extension were equally important. Prioritising quality of life was associated with higher education in all countries (odds ratio = 1.3 (Flanders) to 7.9 (Italy)), experience of caregiving or bereavement (England, Germany, Portugal), prioritising pain/symptom control over having a positive attitude and preferring death in a hospice/palliative care unit. Those prioritising extending life had the highest home death preference of all groups. Health status did not affect priorities., Conclusions: Across all countries, extending life was prioritised by a minority, regardless of health status. Treatment and care needs to be reoriented with patient education and palliative care becoming mainstream for serious conditions such as cancer.

Background: End-of-life cancer patients commonly receive more than one type of strong opioid. The three-step analgesic ladder framework of the World Health Organisation (WHO) provides no guidance on multiple opioid prescribing and there is little epidemiological data available to inform practice. This study aims to investigate the time trend of such cases and the associated factors., Methods: Strong opioid prescribing in the last three months of life of cancer patients were extracted from the General Practice Research Database (GPRD). The outcome variable was the number of different types of prescribed non-rescue doses of opioids (1 vs 2-4, referred to as a complex case). Associated factors were evaluated using prevalence ratios (PR) derived from multivariate log-binomial model, adjusting for clustering effects and potential confounding variables., Results: Overall, 26.4% (95% CI: 25.6-27.1%) of 13,427 cancer patients (lung 41.7%, colorectal 19.1%, breast 18.6%, prostate 15.5%, head and neck 5.0%) were complex cases. Complex cases increased steadily over the study period (1.02% annually, 95%CI: 0.42-1.61%, p = 0.048) but with a small dip (7.5% reduction, 95%CI: -0.03 to 17.8%) around the period of the Shipman case, a British primary care doctor who murdered his patients with opioids. The dip significantly affected the correlation of the complex cases with persistent increasing background opioid prescribing (weighted correlation coefficients pre-, post-Shipman periods: 0.98(95%CI: 0.67-1.00), p = 0.011; 0.14 (95%CI: -0.85 to 0.91), p = 0.85). Multivariate adjusted analysis showed that the complex cases were predominantly associated with year of death (PRs vs 2000: 1.05-1.65), not other demographic and clinical factors except colorectal cancer (PR vs lung cancer: 1.24, 95%CI: 1.12-1.37)., Conclusion: These findings suggest that prescribing behaviour, rather than patient factors, plays an important role in multiple opioid prescribing at the end of life; highlighting the need for training and education that goes beyond the well-recognised WHO approach for clinical practitioners.

Background: Hospital is the most common place of cancer death but concerns regarding the quality of end-of-life care remain., Aim: Preliminary assessment of the effectiveness of the Liverpool Care Pathway on the quality of end-of-life care provided to adult cancer patients during their last week of life in hospital., Design: Uncontrolled before-after intervention cluster trial., Settings/participants: The trial was performed within four hospital wards participating in the pilot implementation of the Italian version of the Liverpool Care Pathway programme. All cancer patients who died in the hospital wards 2-4 months before and after the implementation of the Italian version of Liverpool Care Pathway were identified. A total of 2 months after the patient's death, bereaved family members were interviewed using the Toolkit After-Death Family Interview (seven 0-100 scales assessing the quality of end-of-life care) and the Italian version of the Views of Informal Carers - Evaluation of Services (VOICES) (three items assessing pain, breathlessness and nausea-vomiting)., Results: An interview was obtained for 79 family members, 46 (73.0%) before and 33 (68.8%) after implementation of the Italian version of Liverpool Care Pathway. Following Italian version of Liverpool Care Pathway implementation, there was a significant improvement in the mean scores of four Toolkit scales: respect, kindness and dignity (+16.8; 95% confidence interval = 3.6-30.0; p = 0.015); family emotional support (+20.9; 95% confidence interval = 9.6-32.3; p < 0.001); family self-efficacy (+14.3; 95% confidence interval = 0.3-28.2; p = 0.049) and coordination of care (+14.3; 95% confidence interval = 4.2-24.3; p = 0.007). No significant improvement in symptom' control was observed., Conclusions: These results provide the first robust data collected from family members of a preliminary clinically significant improvement, in some aspects, of quality of care after the implementation of the Italian version of Liverpool Care Pathway programme. The poor effect for symptom control suggests areas for further innovation and development.

Context: A major barrier to widening and sustaining palliative care service provision is the requirement for better selection and use of outcome measures. Service commissioning is increasingly based on patient, carer, and service outcomes as opposed to service activity., Objectives: To generate recommendations and consensus for research in palliative and end-of-life care on the properties of the best outcome measures, enhancing the validity of proxy-reported data and optimal data collection time points., Methods: An international expert "workshop" was convened and an online consensus survey was undertaken using the MORECare Transparent Expert Consultation to generate recommendations and level of agreement. We focused on three areas: 1) measurement properties, 2) use of proxies, and 3) measurement timing. Data analysis comprised descriptive analysis of aggregate scores and collation of narrative comments., Results: There were 31 workshop attendees; 29 recommendations were included in the online survey, completed by 28 experts. The top three recommendations by area were the following: 1) the properties of the best outcome measures are responsive to change over time and capture clinically important data, 2) to enhance the validity of proxy data requires clear and specific guidelines to aid lay individuals' and/or professionals' completion of proxy measures, and 3) data collection time points need clear identification to establish a baseline., Conclusion: Outcome measurement in palliative and end-of-life care requires the use of psychometrically robust measures that are clinically responsive, with defined data collection time points to establish a baseline and clear administration guidelines to complete proxy measures. To further the field requires clinical imperatives to more closely inform recommendations on outcome measurement., (Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Background: Improved and cost-effective palliative and end-of-life care is an international policy imperative. Developments are impeded by a weak and often inconsistent evidence base., Aim: To examine the main methodological challenges and limitations to developing and evaluating palliative and end-of-life care services and requirements to further this field of research., Design: A meta-synthesis to systematically appraise the evidence from systematic reviews on the research methods used in studies evaluating the effectiveness of palliative care services for patients with advanced illness and/or carers meeting inclusion and quality criteria. We extracted data from the reviews on the methodological issues reported on the included studies into Excel spreadsheets and generated textual descriptions coded and analysed in NVivo., Data Sources: Six electronic databases, reference chaining and expert advice., Results: In total, 27 systematic reviews were included on the effectiveness of palliative care services for patients with cancer (n = 6), advanced illness (n = 10) or mixed populations (n = 11) across care settings. Main methodological challenges were implementation as a continuum, active precise recruitment, addressing randomisation and economic evaluation beyond cost savings., Conclusions: The complexity of delivering and evaluating palliative and end-of-life care services requires the accumulation of knowledge from multiple sources to understand the active components of an intervention to deliver patient benefit and examine the evaluation methods to detect change and reveal processes prior to a definitive trial. The implementation of evidence into practice should form a continuum throughout the evaluation stages to reveal understanding on the process of intervention delivery, the context and the intended outcome(s).