Acute care utilisation towards the end of life and the place of death for patients with serious mental disorders: a register-based cohort study in South London.

OBJECTIVES: The aim of the study was to explore acute care utilisation towards end of life by and the place of death for patients with serious mental disorders and to demonstrate any inequalities in end-of-life care faced by this patient group. STUDY DESIGN: This is a retrospective cohort study using linked, routinely collected data. METHODS: This study used linked data extracted from mental health records, Hospital Episode Statistics and mortality data. Adult cases (≥18 years old) were included if they had a serious mental disorder and died between 2007 and 2015. Multiple imputation was used to manage missing data, and generalised linear models were used to assess multiple adjusted associations between sociodemographic and clinical explanatory variables and acute service use at the end of life and in-hospital deaths. RESULTS: A cohort of 1350 adults was analysed. More than half visited the accident and emergency (A&E) department in the last 90 days of life, and a third had a burdensome transition (multiple hospital admissions in the last 90 days of life or at least one in the last three days); the median number of days spent in the hospital was 4 (range: 0-86). Having more comorbidities was a strong correlate of more A&E visits (adjusted odds ratio [OR] = 1.03 [95% confidence interval = 1.02-1.04]), burdensome transitions (adjusted OR = 1.06 [1.04-1.08]) and days spent in the hospital (adjusted OR = 1.04 [1.03-1.05]). Having a diagnosis of schizophrenia spectrum disorder, compared with other serious mental disorder diagnoses, was associated with fewer A&E visits (adjusted OR = 0.78 [0.71-0.88]) and fewer days in the hospital (adjusted OR = 0.77 [0.66-0.89]). Younger age was associated with more A&E visits (adjusted OR = 1.28 [1.07-1.53]) and fewer days spent in the hospital (adjusted OR = 0.70 [0.52-0.95]). Hospital deaths were high (51%), and in a fully adjusted model, they were associated with having more comorbidities (adjusted OR = 1.02 [1.01-1.03]) and accessing acute care at the end of life (including more A&E visits; adjusted OR = 1.07 [1.05-1.10]), burdensome transitions (adjusted OR = 1.53 [1.37-1.71]) and days spent in the hospital (adjusted OR = 2.05 [1.70-247]). CONCLUSION: People with comorbidities are more likely to use more burdensome acute health care at the end of life and are more likely to die in the hospital. Hospital deaths could be reduced, and end-of-life care could be improved by targeting patients with comorbidities and who are accessing more acute healthcare services.

Influences on emergency department attendance among frail older people with deteriorating health: a multicentre prospective cohort study.

OBJECTIVES: To examine the patterns and influences on repeated emergency department attendance among frail older people with deteriorating health. STUDY DESIGN: Multicentre prospective cohort study (International Access Rights and Empowerment II study) with convergent mixed methods design. METHODS: Eligible patients were aged ≥65 years, with Clinical Frailty Score ≥5, and ≥1 hospital admission or ≥2 acute attendances in the previous 6 months. Questionnaires were administered to participants over 6 months and we extracted clinical data from the medical records. We conducted modified Poisson multivariable regression analysis to identify factors associated with repeated emergency department attendance (≥2 over 6 months) and thematic analysis of qualitative interviews. RESULTS: A total of 90 participants were recruited. The mean age was 84 years, and 63% were women. Of 87 participants, 21 experienced repeated emergency department attendance. Severe and/or overwhelming pain (adjusted prevalence ratio 2.44, 95% confidence interval 1.17-5.11), greater number of comorbidities (1.32, 1.08-1.62), ≥10 community nursing contacts (2.93, 1.31-6.56), and a total of ≥2 weeks spent in hospital during the previous 6 months (2.91, 1.24-6.84) were associated with repeated attendance. From 45 interviews, we identified influences on emergency department attendance: 1. inaccessibility of community healthcare; 2. perceived barriers to community healthcare seeking; 3. perceived benefits of hospital admission; 4. barriers to recovery during previous hospital admission (unsuitable food, inactivity); and 5. poorly coordinated transitions between settings. CONCLUSIONS: We identified missed opportunities to optimise older people's recovery during hospital admission, such as improved food and a timely and coordinated discharge, which may reduce reattendances. Proactive care in the community with systematic assessment of symptoms may be required, particularly for those with multimorbidity.

The International Federation for Emergency Medicine report on emergency department crowding and access block: A brief summary.

OBJECTIVE: To develop comprehensive guidance that captures international impacts, causes, and solutions related to emergency department crowding and access block. METHODS: Emergency physicians representing 15 countries from all IFEM regions composed the Task Force. Monthly meetings were held via video-conferencing software to achieve consensus for report content. The report was submitted and approved by the IFEM Board on June 1, 2020. RESULTS: A total of 14 topic dossiers, each relating to an aspect of ED crowding, were researched and completed collaboratively by members of the Task Force. CONCLUSIONS: The IFEM report is a comprehensive document intended to be used in whole or by section to inform and address aspects of ED crowding and access block. Overall, ED crowding is a multifactorial issue requiring systems-wide solutions applied at local, regional, and national levels. Access block is the predominant contributor of ED crowding in most parts of the world.

RéSUMé: OBJECTIFS: Développer des directives détaillées qui saisissent les impacts internationaux, les causes et les solutions liés au surpeuplement et blocages d'accès des urgences. MéTHODES: Des médecins d'urgence représentant 15 pays de toutes les régions de la Fédération Internationale de Médecine d'Urgence (IFEM) ont composé le groupe de travail. Des réunions mensuelles ont été organisées par le biais d'un logiciel de visioconférence afin de parvenir à un consensus sur le contenu du rapport. Le rapport a été soumis et approuvé par le Conseil d'administration de l'IFEM le 1er juin 2020. RéSULTATS : Au total, 14 dossiers thématiques, chacun se rapportant à un aspect de l'engorgement des urgences, ont été documentés et complétés conjointement par les membres du groupe de travail. CONCLUSIONS: Le rapport IFEM est un document détaillé destiné à être utilisé dans son intégralité ou par section pour renseigner et aborder les aspects du surpeuplement et du blocage d'accès des urgences. Dans l'ensemble, l'encombrement dans les services d'urgence est un problème multifactoriel qui nécessite des solutions à l'échelle systémique appliquées aux niveaux local, régional et national. Le blocage d'accès est le principal contributeur à l'engorgement des urgences dans la plupart des régions du monde.

The International Federation for Emergency Medicine report on emergency department crowding and access block: a brief summary.

OBJECTIVE: To develop comprehensive guidance that captures international impacts, causes, and solutions related to emergency department crowding and access block METHODS: Emergency physicians representing 15 countries from all IFEM regions composed the Task Force. Monthly meetings were held via video-conferencing software to achieve consensus for report content. The report was submitted and approved by the IFEM Board on June 1, 2020. RESULTS: A total of 14 topic dossiers, each relating to an aspect of ED crowding, were researched and completed collaboratively by members of the Task Force. CONCLUSIONS: The IFEM report is a comprehensive document intended to be used in whole or by section to inform and address aspects of ED crowding and access block. Overall, ED crowding is a multifactorial issue requiring systems-wide solutions applied at local, regional, and national levels. Access block is the predominant contributor of ED crowding in most parts of the world.

The stability of care preferences following acute illness: a mixed methods prospective cohort study of frail older people.

BACKGROUND: Patient preferences are integral to person-centred care, but preference stability is poorly understood in older people, who may experience fluctuant illness trajectories with episodes of acute illness. We aimed to describe, and explore influences on the stability of care preferences in frail older people following recent acute illness. METHODS: Mixed-methods prospective cohort study with dominant qualitative component, parallel data collection and six-month follow up. STUDY POPULATION: age ≥ 65, Rockwood Clinical Frailty score ≥ 5, recent acute illness requiring acute assessment/hospitalisation. Participants rated the importance of six preferences (to extend life, improve quality of life, remain independent, be comfortable, support 'those close to me', and stay out of hospital) at baseline, 12 and 24 weeks using a 0-4 scale, and ranked the most important. A maximum-variation sub-sample additionally contributed serial in-depth qualitative interviews. We described preference stability using frequencies and proportions, and undertook thematic analysis to explore influences on preference stability. RESULTS: 90/192 (45%) of potential participants consented. 82/90 (91%) answered the baseline questionnaire; median age 84, 63% female. Seventeen undertook qualitative interviews. Most participants consistently rated five of the six preferences as important (range 68-89%). 'Extend life' was rated important by fewer participants (32-43%). Importance ratings were stable in 61-86% of cases. The preference ranked most important was unstable in 82% of participants. Preference stability was supported by five influences: the presence of family support; both positive or negative care experiences; preferences being concordant with underlying values; where there was slowness of recovery from illness; and when preferences linked to long term goals. Preference change was related to changes in health awareness, or life events; if preferences were specific to a particular context, or multiple concurrent preferences existed, these were also more liable to change. CONCLUSIONS: Preferences were largely stable following acute illness. Stability was reinforced by care experiences and the presence of family support. Where preferences were unstable, this usually related to changing health awareness. Consideration of these influences during preference elicitation or advance care planning will support delivery of responsive care to meet preferences. Obtaining longer-term data across diverse ethnic groups is needed in future research.

Processes of consent in research for adults with impaired mental capacity nearing the end of life: systematic review and transparent expert consultation (MORECare_Capacity statement).

BACKGROUND: Involving adults lacking capacity (ALC) in research on end of life care (EoLC) or serious illness is important, but often omitted. We aimed to develop evidence-based guidance on how best to include individuals with impaired capacity nearing the end of life in research, by identifying the challenges and solutions for processes of consent across the capacity spectrum. METHODS: Methods Of Researching End of Life Care_Capacity (MORECare_C) furthers the MORECare statement on research evaluating EoLC. We used simultaneous methods of systematic review and transparent expert consultation (TEC). The systematic review involved four electronic databases searches. The eligibility criteria identified studies involving adults with serious illness and impaired capacity, and methods for recruitment in research, implementing the research methods, and exploring public attitudes. The TEC involved stakeholder consultation to discuss and generate recommendations, and a Delphi survey and an expert 'think-tank' to explore consensus. We narratively synthesised the literature mapping processes of consent with recruitment outcomes, solutions, and challenges. We explored recommendation consensus using descriptive statistics. Synthesis of all the findings informed the guidance statement. RESULTS: Of the 5539 articles identified, 91 met eligibility. The studies encompassed people with dementia (27%) and in palliative care (18%). Seventy-five percent used observational designs. Studies on research methods (37 studies) focused on processes of proxy decision-making, advance consent, and deferred consent. Studies implementing research methods (30 studies) demonstrated the role of family members as both proxy decision-makers and supporting decision-making for the person with impaired capacity. The TEC involved 43 participants who generated 29 recommendations, with consensus that indicated. Key areas were the timeliness of the consent process and maximising an individual's decisional capacity. The think-tank (n = 19) refined equivocal recommendations including supporting proxy decision-makers, training practitioners, and incorporating legislative frameworks. CONCLUSIONS: The MORECare_C statement details 20 solutions to recruit ALC nearing the EoL in research. The statement provides much needed guidance to enrol individuals with serious illness in research. Key is involving family members early and designing study procedures to accommodate variable and changeable levels of capacity. The statement demonstrates the ethical imperative and processes of recruiting adults across the capacity spectrum in varying populations and settings.

What influenced people with chronic or refractory breathlessness and advanced disease to take part and remain in a drug trial? A qualitative study.

BACKGROUND: Recruitment and retention in clinical trials remains an important challenge, particularly in the context of advanced disease. It is important to understand what affects retention to improve trial quality, minimise attrition and reduce missing data. We conducted a qualitative study embedded within a randomised feasibility trial and explored what influenced people to take part and remain in the trial. METHODS: We conducted a qualitative study embedded within a double-blind randomised trial (BETTER-B[Feasibility]: BETter TreatmEnts for Refractory Breathlessness) designed using a person-centred approach. Participants with cancer, chronic obstructive pulmonary disease (COPD), interstitial lung disease (ILD), or chronic heart failure (CHF), with a modified Medical Research Council dyspnoea scale grade of 3/4 were recruited from three UK sites. A convenience subsample completed qualitative interviews after the trial. Interviews were analysed using thematic analysis. Results were considered in relation to the core elements of person-centred care and our model of the person-centred trial. RESULTS: In the feasibility trial 409 people were screened for eligibility, and 64 were randomised. No participant was lost to follow-up. Twenty-two participants took part in a qualitative interview. Eleven had a diagnosis of COPD, 8 ILD, 2 CHF and 1 lung cancer. The participants' median age was 71 years (range 56-84). Sixteen were male. Twenty had completed the trial, and two withdrew due to adverse effects. The relationship between patient and professional, potential for benefit, trial processes and the intervention all influenced the decision to participate in the trial. The relationship with the research team and continuity, perceived benefit, and aspects relating to trial processes and the intervention influenced the decision to remain in the trial. CONCLUSIONS: In this feasibility trial recruitment targets were met, attrition levels were low, and aspects of the person-centred approach were viewed positively by trial participants. Prioritisation of the relationship between the patient and professional; person-centred processes, including home visits, assistance with questionnaires, and involvement of the carer; and enabling people to participate by having processes in line with individual capabilities appear to support recruitment and retention in clinical trials in advanced disease. We recommend the integration of a person-centred approach in all clinical trials. TRIAL REGISTRATION: ISRCTN Registry, ISRCTN32236160. Registered on 13 June 2016.

Mirtazapine for chronic breathlessness? A review of mechanistic insights and therapeutic potential.

INTRODUCTION: Chronic breathlessness is a common and distressing symptom of advanced disease with few effective treatments. Central nervous system mechanisms are important in respiratory sensation and control. Consequently, drugs which may modify processing and perception of afferent information in the brain may have a role. Antidepressants have been proposed; however, current evidence is limited. Of potentially suitable antidepressants, mirtazapine is an attractive option given its tolerability profile, low cost, and wide availability, along with additional potential benefits. Areas covered: The paper provides an overview of the physiology of breathlessness, with an emphasis on central mechanisms, particularly the role of fear circuits and the associated neurotransmitters. It provides a potential rationale for how mirtazapine may improve chronic breathlessness and quality of life in patients with advanced disease. The evidence was identified by a literature search performed in PubMed through to October 2018. Expert opinion: Currently, there is insufficient evidence to support the routine use of antidepressants for chronic breathlessness in advanced disease. Mirtazapine is a promising candidate to pursue, with definitive randomized controlled trials required to determine its efficacy and safety in this setting.

How many people will need palliative care in 2040? Past trends, future projections and implications for services.

BACKGROUND: Current estimates suggest that approximately 75% of people approaching the end-of-life may benefit from palliative care. The growing numbers of older people and increasing prevalence of chronic illness in many countries mean that more people may benefit from palliative care in the future, but this has not been quantified. The present study aims to estimate future population palliative care need in two high-income countries. METHODS: We used mortality statistics for England and Wales from 2006 to 2014. Building on previous diagnosis-based approaches, we calculated age- and sex-specific proportions of deaths from defined chronic progressive illnesses to estimate the prevalence of palliative care need in the population. We calculated annual change over the 9-year period. Using explicit assumptions about change in disease prevalence over time, and official mortality forecasts, we modelled palliative care need up to 2040. We also undertook separate projections for dementia, cancer and organ failure. RESULTS: By 2040, annual deaths in England and Wales are projected to rise by 25.4% (from 501,424 in 2014 to 628,659). If age- and sex-specific proportions with palliative care needs remain the same as in 2014, the number of people requiring palliative care will grow by 25.0% (from 375,398 to 469,305 people/year). However, if the upward trend observed from 2006 to 2014 continues, the increase will be of 42.4% (161,842 more people/year, total 537,240). In addition, disease-specific projections show that dementia (increase from 59,199 to 219,409 deaths/year by 2040) and cancer (increase from 143,638 to 208,636 deaths by 2040) will be the main drivers of increased need. CONCLUSIONS: If recent mortality trends continue, 160,000 more people in England and Wales will need palliative care by 2040. Healthcare systems must now start to adapt to the age-related growth in deaths from chronic illness, by focusing on integration and boosting of palliative care across health and social care disciplines. Countries with similar demographic and disease changes will likely experience comparable rises in need.

The value of uncertainty in critical illness? An ethnographic study of patterns and conflicts in care and decision-making trajectories.

BACKGROUND: With increasingly intensive treatments and population ageing, more people face complex treatment and care decisions. We explored patterns of the decision-making processes during critical care, and sources of conflict and resolution. METHODS: Ethnographic study in two Intensive Care Units (ICUs) in an inner city hospital comprising: non-participant observation of general care and decisions, followed by case studies where treatment limitation decisions, comfort care and/or end of life discussions were occurring. These involved: semi-structured interviews with consenting families, where possible, patients; direct observations of care; and review of medical records. RESULTS: Initial non-participant observation included daytime, evenings, nights and weekends. The cases were 16 patients with varied diagnoses, aged 19-87 years; 19 family members were interviewed, aged 30-73 years. Cases were observed for <1 to 156 days (median 22), depending on length of ICU admission. Decisions were made serially over the whole trajectory, usually several days or weeks. We identified four trajectories with distinct patterns: curative care from admission; oscillating curative and comfort care; shift to comfort care; comfort care from admission. Some families considered decision-making a negative concept and preferred uncertainty. Conflict occurred most commonly in the trajectories with oscillating curative and comfort care. Conflict also occurred inside clinical teams. Families were most often involved in decision-making regarding care outcomes and seemed to find it easier when patients switched definitively from curative to comfort care. We found eight categories of decision-making; three related to the care outcomes (aim, place, response to needs) and five to the care processes (resuscitation, decision support, medications/fluids, monitoring/interventions, other specialty involvement). CONCLUSIONS: Decision-making in critical illness involves a web of discussions regarding the potential outcomes and processes of care, across the whole disease trajectory. When measures oscillate between curative and comfort there is greatest conflict. This suggests a need to support early communication, especially around values and preferred care outcomes, from which other decisions follow, including DNAR. Offering further support, possibly with expert palliative care, communication, and discussion of 'trial of treatment' may be beneficial at this time, rather than waiting until the 'end of life'.

'I'll continue as long as I can, and die when I can't help it': a qualitative exploration of the views of end-of-life care by those affected by head and neck cancer (HNC).

BACKGROUND: Evidence currently suggests that many people would prefer to die at home. However, optimal end-of-life homecare depends on the patient's ability to express their care preferences, prognostic awareness, complexity of care, concordance of patient/carer preferences and availability of appropriate services/support. This study explores Irish Head and Neck Cancer (HNC) patient and caregivers' views on end-of-life care (EoLC), an area hitherto little studied. METHODS: Qualitative data were collected using semistructured, one-to-one interviews with HNC patients with therapeutic experience and their nearest caregivers (n=10, 7 patients, 3 carers). Interview topic guide was developed from the PRISMA EoLC survey. Thematic content analysis was employed to interpret findings. RESULTS: Thematic analysis identified five broad EoLC themes: prognostication, decision making, preferred focus of care/advanced care planning (ACP), preferred place of care/death, perceived barriers/supports to home death. Participants were very willing to discuss most aspects of EoLC, exhibiting no signs of distress. Patients were reluctant to discuss preferred focus-of-care and ACP. This seemed linked to an overly optimistic view of aggressive medical intervention. While carers favoured full patient involvement in decision making, patients were divided between wanting autonomy and those preferring a more passive approach. All expressed a preference for homecare, and most felt they would ideally prefer to die at home. However, decision making was considered a complex process intertwined with risks, responsibilities and commitments to others. Carer burden and symptom control were major concerns. CONCLUSIONS: Normalising discussions on EoLC may benefit those affected by HNC. However, in HNC, this needs to be done alongside discussions regarding potentially life-extending treatment, symptom management and support.

The gap between policy and practice: a systematic review of patient-centred care interventions in chronic heart failure.

Patient-centred care (PCC) is recommended in policy documents for chronic heart failure (CHF) service provision, yet it lacks an agreed definition. A systematic review was conducted to identify PCC interventions in CHF and to describe the PCC domains and outcomes. Medline, Embase, CINAHL, PsycINFO, ASSIA, the Cochrane database, clinicaltrials.gov, key journals and citations were searched for original studies on patients with CHF staged II-IV using the New York Heart Association (NYHA) classification. Included interventions actively supported patients to play informed, active roles in decision-making about their goals of care. Search terms included 'patient-centred care', 'quality of life' and 'shared decision making'. Of 13,944 screened citations, 15 articles regarding 10 studies were included involving 2540 CHF patients. Three studies were randomised controlled trials, and seven were non-randomised studies. PCC interventions focused on collaborative goal setting between patients and healthcare professionals regarding immediate clinical choices and future care. Core domains included healthcare professional-patient collaboration, identification of patient preferences, patient-identified goals and patient motivation. While the strength of evidence is poor, PCC has been shown to reduce symptom burden, improve health-related quality of life, reduce readmission rates and enhance patient engagement for patients with CHF. There is a small but growing body of evidence, which demonstrates the benefits of a PCC approach to care for CHF patients. Research is needed to identify the key components of effective PCC interventions before being able to deliver on policy recommendations.

If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis.

OBJECTIVE: With increasing European cancer deaths, clinicians must manage information regarding poor prognosis. This study aimed to determine European citizens' preferences, within a scenario of serious illness such as cancer with less than a year to live, for information disclosure regarding poor prognosis, the likely symptoms and problems, and the care options available, to measure variations between countries and to identify factors associated with preferences. METHODS: A population-based cross-national telephone survey using random digit dialling in seven countries was conducted. RESULTS: Among 9344 respondents, data revealed an international preference (73.9%) to always be informed in the scenario of having a serious illness such as cancer with less than a year to live. This varied from 67.6% in Italy to 80.7% in Flanders. A minority (21.1%) did not want such information unless they ask, or at all. People younger than 70 years (OR 0.72, 95% CI 0.62-0.83, p < 0.001), men (OR 1.23, 95% CI 1.10-1.37, p < 0.001), those with experience of illness (OR = 1.20. 95% CI 1.01-1.43, p < 0.05) and with more education (OR = 1.20, 95% CI 1.09-1.32, p < 0.001) were more likely to want to know of limited time left. CONCLUSIONS: The models confirmed the influence of four factors in more than one country (age, gender, education and most concerning problem) and added 11 country-specific factors to which national policies and clinical practice should respond. These findings confirm a majority public preference to be informed in a scenario of poor prognosis. Policy clinical practice should facilitate elucidation and delivery of preferences. Evidence for effective communication skills-building interventions for clinicians is required.

Population, mortality and place of death in Germany (1950-2050) - implications for end-of-life care in the future.

OBJECTIVES: European populations are ageing, but data on the associated end-of-life care needs are scarce. This study aimed to analyse population, mortality and place of death (PoD) trends in Germany since 1950, and to project mortality by PoD until 2050. STUDY DESIGN AND METHODS: Secondary analysis of national statistics on population, mortality and PoD by age and gender. Future numbers and proportions of deaths by PoD - hospital deaths (HDs) and non-hospital deaths (NHDs) - were based on recent trends (2005-2009). Linear models accounted for the effect of age and gender. RESULTS: The German population increased by 19.0% between 1950 and 2002, and has remained relatively stable ever since. However, it is expected that it will decrease (15.4%) from 2009 to 2050 (from 81.8 to 69.4 million). The annual number of deaths has shown an increasing trend, except for a decrease in 1975-2004. A 26.0% increase is expected from 2009 to 2050 (854,544 to 1,077,000 deaths). Older people (age ≥ 75 years) will account for 87.8% of all deaths in 2050 (64.4% in 2009). The proportion of HDs was stable, with an annual mean of 47.0% (range 44.9-47.8%). The models estimated that most people will continue to die outside of hospital in 2050 (48.6 or 54.1%), and absolute numbers of both HDs and NHDs will increase from 2009 to 2050 [HD: by 20.1 million (30.6%); NHD: by 35.5 million (17.0%)]. CONCLUSIONS: Unlike in other industrialized countries, most people in Germany die outside of hospital. The need to plan for growing end-of-life care needs and ageing is urgent in Germany but also applies to the rest of Europe. A joint European policy must inform national strategies.

Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain.

BACKGROUND: Cancer end-of-life care (EoLC) policies assume people want to die at home. We aimed to examine variations in preferences for place of death cross-nationally. METHODS: A telephone survey of a random sample of individuals aged ≥16 in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. We determined where people would prefer to die if they had a serious illness such as advanced cancer, facilitating circumstances, personal values and experiences of illness, death and dying. RESULTS: Of 9344 participants, between 51% (95% CI: 48% to 54%) in Portugal and 84% (95% CI: 82% to 86%) in the Netherlands would prefer to die at home. Cross-national analysis found there to be an influence of circumstances and values but not of experiences of illness, death and dying. Four factors were associated with a preference for home death in more than one country: younger age up to 70+ (Germany, the Netherlands, Portugal, Spain), increased importance of dying in the preferred place (England, Germany, Portugal, Spain), prioritizing keeping a positive attitude (Germany, Spain) and wanting to involve family in decisions if incapable (Flanders, Portugal). CONCLUSIONS: At least two-thirds of people prefer a home death in all but one country studied. The strong association with personal values suggests keeping home care at the heart of cancer EoLC.

Are we heading in the same direction? European and African doctors' and nurses' views and experiences regarding outcome measurement in palliative care.

OBJECTIVE: To examine and compare doctors' and nurses' views and experiences regarding outcome measurement in palliative care, including patient-reported outcome measures (PROMs). METHODS: A web-based survey developed through expert review and piloting was conducted in Europe and Africa with palliative care professionals working in clinical care, audit and research. RESULTS: The overall participation rate was 42% (663/1592) and the overall completion rate was 59% (392/663). Of these respondents, 196 were doctors (51% male, mean 47 years) and 104 were nurses (84% female, mean 45 years). Doctors' most common reported reasons for not using tools were time constraints followed by lack of training. For nurses, it was lack of training followed by time constraints. Provision of information and guidance influenced willingness to use measures. For those that used tools, most reported favourable outcome measurement experiences. Both prioritized brief PROMs, and measures that included physical and psychological domains. For clinical purposes, the main advantage for doctors was assessment/screening, and clinical decision making for nurses. For research, doctors were most influenced by a measure's comparability with national/international literature followed by its validation in palliative care. For nurses, validation in palliative care was followed by tool access. CONCLUSION: Overall these respondents shared similar views and experiences, and both were influenced by similar factors. Multidisciplinary outcome measurement education and training is feasible and required. Multidimensional and brief PROMs that include physical and psychological domains need to be prioritized, and access to freely available, validated and translated tools is needed to ensure cross-national comparisons and coordination of international research.

What are the perceived needs and challenges of informal caregivers in home cancer palliative care? Qualitative data to construct a feasible psycho-educational intervention.

PURPOSE: Tailored and specific interventions for informal caregivers in palliative care are rare. We aimed to generate evidence to inform a subsequent appropriate intervention based on caregivers' experiences. METHOD: Single, semi-structured qualitative interviews were undertaken with 20 informal cancer caregivers of home cancer palliative care. RESULTS: Carers reported the need to be prepared for their caring role, to be visible to professionals, to receive clear and specific information about the patient's condition, and to be emotionally supported. They described challenges as uncertainty, distress at witnessing disease progression and the daily struggle with financial issues, personal time, own health and sleep problems. CONCLUSIONS: Considering the time pressures and restricted caregiver time, the intervention should be brief and should aim to enhance their visibility as service recipients, patient-specific information giving, preparation for their role, and emotional support.

Prescription patterns of analgesics in the last 3 months of life: a retrospective analysis of 10202 lung cancer patients.

BACKGROUND: To describe the prescription patterns of analgesics during the last 3 months of life in lung cancer and to determine the associated factors. METHODS: Data on lung cancer patients (N=10,202) who died during 2000-2008 were extracted from the General Practice Research Database (GPRD). This database records prescriptions of patients received from UK general practices (GP), but not those from non-GP routes. Prescription prevalences were estimated. The associated factors were investigated using log-binomial regression. RESULTS: The overall prescription prevalences were 50.4% (95% confidence interval (CI): 49.4-51.4%) for level 1 (e.g., paracetamol), 34.1% (95% CI: 33.2-35.0%) for level 2 (weak opioids), and 55.5 % (95% CI: 54.5-56.4%) for level 3 analgesics (strong opioids). Prescription prevalence of analgesics of all levels showed an increasing trend over the period 2000-2008 (annual increases range: 1.1-1.5%) but a decreasing trend with age (average decrease per group range: -5.8 to -1.8%). Patients in the older age groups were less likely to be prescribed level 3 analgesics than those in the younger age groups (PR('90+' vs '<50')=0.55 (95% CI: 0.45-0.67); PR('80-89' vs '<50')=0.73 (95% CI: 0.66-0.79); PR('70-79' vs '<50')=0.84 (95% CI: 0.77-0.90)). CONCLUSION: Analgesics have been increasingly prescribed in lung cancer. However, analgesics, especially at level 3, were relatively under-prescribed to people older than 70 years, warranting further investigation.

Demand and capacity planning in the emergency department: how to do it.

BACKGROUND: Unless emergency departments have adequate capacity to meet demand, they will fail to meet clinical and performance standards and will be operating in the 'coping zone'. This carries risks both for staff and patients. METHODS: As part of a quality improvement programme, the authors undertook an in-depth analysis of demand and capacity for an emergency department in the UK. The paper describes this rigorous approach to capacity planning, which draws on techniques from other industries. DISCUSSION AND CONCLUSIONS: Proper capacity planning is vital, but is often poorly done. Planning using aggregated data will lead to inadequate capacity. Understanding demand, and particularly the variation in that demand, is critical to success. Analysis of emergency department demand and capacity is the first step towards effective workforce planning and process redesign.

Emergency department staff knowledge of massive transfusion for trauma: the need for an evidence based protocol.

INTRODUCTION: Uncontrolled haemorrhage is the leading cause of potentially reversible early in-hospital death following trauma. Approximately 25% of trauma patients arriving in the emergency department have evidence of early coagulopathy. It is vital that staff within the emergency department understand the basic pathophysiological consequences of massive blood loss in trauma and are familiar with when and how to administer blood and specific blood components in trauma resuscitation. METHODS: A structured questionnaire designed to test knowledge of the use of blood and blood components in trauma resuscitation was distributed to the emergency physicians attending a regional conference in the South West of England. The questionnaire consisted of 16 questions, both multiple choice and short answer format, referenced via Medline. RESULTS: 32/32 questionnaires distributed were completed and returned. Massive transfusion protocols existed in 4/11 hospitals surveyed. 5/32 doctors were able to define the term 'massive transfusion' while 9/32, 6/32 and 3/32 were consistent with current guidelines in their prescription of platelets, fresh frozen plasma, and cryoprecipitate. 20/32 were consistent with current guidelines in identifying optimal haemoglobin levels. When asked more specifically about blood component therapy, 18/32 correctly identified target fibrinogen levels, 27/32 knew that fibrinogen is a component of fresh frozen plasma or cryoprecipitate and 1/32 correctly identified that fibrinogen is a component of both. 10/32 identified indications for beriplex and 5/32 doctors correctly identified indications for the use of recombinant factor VIIa. 20/32 doctors guessed >50% of the answers and the remaining 12/32 guessed 50%. CONCLUSIONS: The survey found that emergency physicians lacked core knowledge about the use of blood and blood component therapy in the context of massive haemorrhage following trauma. Doctors were unaware of how to prevent and treat early coagulopathy. Educational resources specifically for use by emergency physicians are limited on this topic. The use of massive transfusion protocols--that standardised blood component therapy is automatically delivered at specific points within resuscitation--would not only guide doctors, but be a clear step towards minimising the complications associated with massive transfusion.