Do Patients Want to Die at Home? A Systematic Review of the UK Literature, Focused on Missing Preferences for Place of Death.

BACKGROUND: End-of-life care policy has a focus on enabling patients to die in their preferred place; this is believed for most to be home. This review assesses patient preferences for place of death examining: the extent of unreported preferences, the importance of patient factors (place of care and health diagnosis) and who reports preferences. METHODS AND FINDINGS: Systematic literature review of 7 electronic databases, grey literature, backwards citations from included studies and Palliative Medicine hand search. Included studies published between 2000-2015, reporting original, quantifiable results of adult UK preferences for place of death. Of 10826 articles reviewed, 61 met the inclusion criteria. Summary charts present preferences for place of death by health diagnosis, where patients were asked and who reported the preference. These charts are recalculated to include 'missing data,' the views of those whose preferences were not asked, expressed or reported or absent in studies. Missing data were common. Across all health conditions when missing data were excluded the majority preference was for home: when missing data were included, it was not known what proportion of patients with cancer, non-cancer or multiple conditions preferred home. Patients, family proxies and public all expressed a majority preference for home when missing data were excluded: when included, it was not known what proportion of patients or family proxies preferred home. Where patients wished to die was related to where they were asked their preference. Missing data calculations are limited to 'reported' data. CONCLUSIONS: It is unknown what proportion of patients prefers to die at home or elsewhere. Reported preferences for place of death often exclude the views of those with no preference or not asked: when 'missing data' are included, they supress the proportion of preferences for all locations. Caution should be exercised if asserting that most patients prefer to die at home.

Understanding hospital admissions close to the end of life (ACE) study.

BACKGROUND: Palliative care is a policy priority internationally. In England, policymakers are seeking to develop high quality care for all by focusing on reducing the number of patients who die in acute hospitals. It is argued that reducing 'inappropriate' hospital admissions will lead to an improvement in the quality of care and provide cost savings.Yet what is meant by an 'inappropriate' admission is unclear and is unlikely to be shared by all stakeholders. The decision process that leads to hospital admission is often challenging, particularly when patients are frail and elderly. The ACE study reopens the idea of 'inappropriate' hospital admissions close to the end of life. We will explore how decisions that result in inpatient admissions close to death are made and valued from the perspective of the decision-maker, and will consider the implications of these findings for current policy and practice. DESIGN/METHODS: The study focuses on the admission of patients with advanced dementia, chest disease or cancer who die within 72 hours of admission to acute hospitals. The study uses mixed methods with three data collection phases. Phase one involves patient case studies of admissions with interviews with clinicians involved in the admission and next-of-kin. Phase two uses vignette-based focus groups with clinical professionals and patients living with the conditions of interest. Phase three uses questionnaires distributed to clinical stakeholders. Qualitative data will be explored using framework analysis whilst the questionnaire data will be examined using descriptive statistical analysis. Findings will be used to evaluate current policy and literature. DISCUSSION: Significant ethical and validity issues arise due to the retrospective nature of phase one of the study. We are not able to gain consent from patients who have died, and the views of the deceased patients cannot be included directly, which risks privileging professional views. This phase also relies on the memories of the participants which may be unreliable. Later phases of the study attempt to compensate for the "absent voices" of the deceased patients by including next-of-kin and patient focus groups.

Developing engagement, linkage and exchange between health services managers and researchers: Experience from the UK.

OBJECTIVES: The UK National Institute for Health Research (NIHR) Service Delivery and Organisation (SDO) Management Fellowship programme enabled health services managers and university researchers to collaborate on research projects with the aim of improving research, managers' research knowledge and skills, and the use of research in management. Our aim was to evaluate whether the programme encouraged greater engagement, linkage and exchange between researchers and managers. METHODS: A case-study approach with each case-study centred on 11 health care managers appointed as Fellows, chief investigators (n = 13) and Fellows' line managers (n = 12). Data were collected through semi-structured face-to-face and telephone interviews. Interviews were analysed thematically to explore the impact of the programme, reported issues and to identify any lessons learned. RESULTS: Researchers benefited from the flow of (insider) knowledge and contacts from the workplace via the Fellow to the project. Engagement, linkage and exchange as a result of the Fellowship were less developed for the workplace. Reasons for this related to the fit of the research project with workplace interests, Fellows' contact with the health care organization, feedback structures and training. The potential for co-production of knowledge was under-developed. A transactional notion of exchange was found in operation in workplaces. CONCLUSIONS: The programme's aim to enhance engagement, linkage and exchange was largely achieved, although exchange tended to be narrowly conceived. Knowing how models of exchange work in practice can ensure effort is put to best use.

Collaboration between health services managers and researchers: making a difference?

OBJECTIVE: Our aim was to evaluate whether the involvement of health care managers in research projects improves the quality and relevance of research, and whether collaboration builds capacity in the managerial community. METHODS: The NIHR Service Delivery and Organization Management Fellowship programme supports the direct involvement of health care managers in research projects. Data were collected from face-to-face interviews with management fellows and chief investigators of research projects at 10 case study sites. Data were analysed thematically using an adapted Kirkpatrick framework for programme evaluation. RESULTS: Management fellows improved the relevance and quality of research through enhancing its validity, efficiency and credibility. This was achieved by: using their contextual understanding to enable and support access and recruitment participants, data collection tools, processes and analysis; supporting dissemination activities; and undertaking additional work which was complementary to the main project. Capacity was developed through formal courses and exposure to new knowledge, ideas and practices. Factors found to enable or impede improvements in research included management fellows' knowledge and experience of the NHS, their background and personal characteristics, mutual respect, timing and flexibility. Consequences were not always predictable. Costs for management fellows included foregone opportunities, specifically for promoted posts. Researchers reported time-costs associated with administering the fellowship. CONCLUSIONS: Collaborations between managers and researchers can improve research relevance and quality and research capacity development. Factors critical to success relate to the fit between the project and the management fellow and how clearly the purpose is understood.

Emergency department crowding: towards an agenda for evidence-based intervention.

OBJECTIVE: To determine the causes of emergency department (ED) crowding and to identify evidence-based solutions. DESIGN: The review used a 'conceptual synthesis' approach to identify knowledge and opinion around the issue of ED crowding, not just effective interventions. Recommendations from the literature were classified according the quality of evidence and the extent to which they were under ED control. DATA SOURCES: SCOPUS and ISI were searched for studies of 'ED' AND 'crowding OR overcrowding' and backward citation retrieval was undertaken. To help identify systematic review evidence of effective interventions, the Cochrane Database, the National Institute of Health and Clinical Excellence (NICE) and NHS Evidence were searched. A Google search was included to identify relevant grey literature. ELIGIBILITY CRITERIA: Papers were included if they added to substantive knowledge of ED crowding. Empirical studies, studies from the UK and studies of physical space were privileged in the review. RESULTS: There is an established international literature on ED crowding. It suggests consistently that crowding has significant negative consequences. However, the literature offers limited practical help to practitioners for a number of reasons, such as a lack of shared definition and measurement of crowding and lack of evaluation of interventions. Many studies are single case studies from the USA. CONCLUSIONS: While current evidence is poor, this does not justify maintaining current practice which risks lives. Building up an evidence base is critical, but requires agreed definitions, measures and methods, which can be applied to systematic evaluation of plausible solutions.

The answer is 17 years, what is the question: understanding time lags in translational research.

This study aimed to review the literature describing and quantifying time lags in the health research translation process. Papers were included in the review if they quantified time lags in the development of health interventions. The study identified 23 papers. Few were comparable as different studies use different measures, of different things, at different time points. We concluded that the current state of knowledge of time lags is of limited use to those responsible for R&D and knowledge transfer who face difficulties in knowing what they should or can do to reduce time lags. This effectively 'blindfolds' investment decisions and risks wasting effort. The study concludes that understanding lags first requires agreeing models, definitions and measures, which can be applied in practice. A second task would be to develop a process by which to gather these data.

Does social marketing provide a framework for changing healthcare practice?

OBJECTIVES: We argue that social marketing can be used as a generic framework for analysing barriers to the take-up of clinical guidelines, and planning interventions which seek to enable this change. METHODS: We reviewed the literature on take-up of clinical guidelines, in particular barriers and enablers to change; social marketing principles and social marketing applied to healthcare. We then applied the social marketing framework to analyse the literature and to consider implications for future guideline policy to assess its feasibility and accessibility. RESULTS: There is sizeable extant literature on healthcare practitioners' non-compliance with clinical guidelines. This is an international problem common to a number of settings. The reasons for poor levels of take up appear to be well understood, but not addressed adequately in practice. Applying a social marketing framework brings new insights to the problem." CONCLUSIONS: We show that a social marketing framework provides a useful solution-focused framework for systematically understanding barriers to individual behaviour change and designing interventions accordingly. Whether the social marketing framework provides an effective means of bringing about behaviour change remains an empirical question which has still to be tested in practice. The analysis presented here provides strong motivation to begin such testing.

Drug misuse treatment services in Scotland: predicting outcomes.

OBJECTIVE: To investigate which aspects of treatment satisfaction are the best predictors of improved health, improved mental health and achievement of abstinence in drug misuse treatment services. DESIGN: Data were collected as part of the Drug Outcome Research in Scotland study, a prospective cohort study designed to evaluate drug misuse treatment provided in Scotland. Data were collected using a structured interview. Participants were recruited between 1 October 2001 and 30 June 2002. Follow-up interviews were carried out approximately 8 months later. Logistic regression analysis is used to explore client satisfaction with treatment on outcomes, using the Treatment Perceptions Questionnaire (discussed in Marsden et al., Assessing client satisfaction with treatment for substance use problems and the development of the Treatment Perceptions Questionnaire (TPQ). Addict Res 2000;8:455-70). SETTING: Prison, residential and community facilities. PARTICIPANTS: A total of 841 drug users starting a new episode of drug treatment in Scotland in 2000-01. INTERVENTIONS: Methadone, substitute drugs other than methadone, residential rehabilitation, residential detoxification and non-clinical. MAIN OUTCOME MEASURES: Reported improvements in physical health, mental health and abstinence. RESULTS: Client satisfaction predicted positive outcomes, independent of treatment setting. Predicting abstinence and improved physical and mental health were the items: 'I have received the help that I was looking for' and 'The staff have helped to motivate me to sort out my problems'. CONCLUSIONS: Feeling that treatment is appropriate, finding staff motivating, and having enough time to sort out problems are important aspects of satisfaction with treatment among users of drug treatment services who achieved positive treatment outcomes. Services should seek to provide more individualized services based on understanding of individual client needs. This may require longer treatment periods and greater client involvement.