Outcomes of clinical ethics support near the end of life: A systematic review.

BACKGROUND: Clinical ethics support services have been advocated in recent decades. In clinical practice, clinical ethics support services are often requested for difficult decisions near the end of life. However, their contribution to improving healthcare has been questioned and demands for evaluation have been put forward. Research indicates that there are considerable challenges associated with defining adequate outcomes for clinical ethics support services. In this systematic review, we report findings of qualitative studies and surveys, which have been conducted to evaluate clinical ethics support services near the end of life. METHODS: Electronic databases and other sources were queried from 1970 to May 2018. Two authors screened studies independently. Methodological quality of studies was assessed. For each arm of the review, an individual synthesis was performed. Prospero ID: CRD42016036241. ETHICAL CONSIDERATIONS: Ethical approval is not needed as it is a systematic review of published literature. RESULTS: In all, 2088 hits on surveys and 2786 on qualitative studies were found. After screening, nine surveys and four qualitative studies were included. Survey studies report overall positive findings using a very wide and heterogeneous range of outcomes. Negative results were reported only occasionally. However, methodological quality and conceptual justification of used outcomes was often weak and limits generalizability of results. CONCLUSION: Evidence points to positive outcomes of clinical ethics support services. However, methodological quality needs to be improved. Further qualitative or mixed-method research on evaluating clinical ethics support services may contribute to the development of evaluating outcomes of clinical ethics support services by means of broaden the range of appropriate (process-oriented) outcomes of (different types of) clinical ethics support services.

Ethical case interventions for adult patients.

BACKGROUND: Decisions in clinical medicine can be associated with ethical challenges. Ethical case interventions (e.g. ethics committee, moral case deliberation) identify and analyse ethical conflicts which occur within the context of care for patients. Ethical case interventions involve ethical experts, different health professionals as well as the patient and his/her family. The aim is to support decision-making in clinical practice. This systematic review gathered and critically appraised the available evidence of controlled studies on the effectiveness of ethical case interventions. OBJECTIVES: To determine whether ethical case interventions result in reduced decisional conflict or moral distress of those affected by an ethical conflict in clinical practice; improved patient involvement in decision-making and a higher quality of life in adult patients. To determine the most effective models of ethical case interventions and to analyse the use and appropriateness of the outcomes in experimental studies. SEARCH METHODS: We searched the following electronic databases for primary studies to September 2018: CENTRAL, MEDLINE, Embase, CINAHL and PsycINFO. We also searched CDSR and DARE for related reviews. Furthermore, we searched Clinicaltrials.gov, International Clinical Trials Registry Platform Search Portal and conducted a cited reference search for all included studies in ISI WEB of Science. We also searched the references of the included studies. SELECTION CRITERIA: We included randomised trials, non-randomised trials, controlled before-after studies and interrupted time series studies which compared ethical case interventions with usual care or an active control in any language. The included population were adult patients. However, studies with mixed populations consisting of adults and children were included, if a subgroup or sensitivity analysis (or both) was performed for the adult population. DATA COLLECTION AND ANALYSIS: We used standard methodological procedures expected by Cochrane and the Effective Practice and Organisation of Care review group. We used meta-analysis based on a random-effects model for treatment costs and structured analysis for the remaining outcomes, because these were heterogeneously reported. We used the GRADE approach to assess the certainty of the evidence. MAIN RESULTS: We included four randomised trials published in six articles. The publication dates ranged from 2000 to 2014. Three studies were conducted in the USA, and one study in Taiwan. All studies were conducted on intensive care units and included 1165 patients. We judged the included studies to be of moderate or high risk of bias. It was not possible to compare different models of the intervention regarding effectiveness due to the diverse character of the interventions and the small number of studies. Included studies did not directly measure the main outcomes. All studies received public funding and one received additional funding from private sources.We identified two models of ethical case interventions: proactive and request-based ethics consultation. Three studies evaluated proactive ethics consultation (n = 1103) of which one study reported findings on one key outcome criterion. The studies did not report data on decisional conflict, moral distress of participants of ethical case interventions, patient involvement in decision-making, quality of life or ethical competency for proactive ethics consultation. One study assessed satisfaction with care on a 5-point Likert scale (1 = lowest rating, 5 = highest rating). The healthcare providers (nurses and physicians, n = 365) scored a value of 4 or 5 for 81.4% in the control group and 86.1% in the intervention group (P > 0.05). The patients or their surrogates (n = 275) scored a value of 4 or 5 for 83.6% in the control group and for 74.8% in the intervention group (P > 0.05). It was uncertain whether proactive ethics consultation led to high satisfaction with care, because the certainty of evidence was very low.One study evaluated request-based ethics consultation (n = 62). The study indirectly measured decisional conflict by assessing consensus regarding patient care. The risk (increase in consensus, reduction in decisional conflict) increased by 80% as a result of the intervention. The risk ratio was 0.20 (95% confidence interval 0.09 to 0.46; P < 0.01). It was uncertain whether request-based ethics consultation reduced decisional conflict, because the certainty of evidence was very low. The study did not report data on moral distress of participants of ethical case interventions, patient involvement in decision-making, quality of life, or ethical competency or satisfaction with care for request-based ethics consultation. AUTHORS' CONCLUSIONS: It is not possible to determine the effectiveness of ethical case interventions with certainty due to the low certainty of the evidence of included studies in this review. The effectiveness of ethical case interventions should be investigated in light of the outcomes reported in this systematic review. In addition, there is need for further research to identify and measure outcomes which reflect the goals of different types of ethical case intervention.

Do we understand the intervention? What complex intervention research can teach us for the evaluation of clinical ethics support services (CESS).

BACKGROUND: Evaluating clinical ethics support services (CESS) has been hailed as important research task. At the same time, there is considerable debate about how to evaluate CESS appropriately. The criticism, which has been aired, refers to normative as well as empirical aspects of evaluating CESS. MAIN BODY: In this paper, we argue that a first necessary step for progress is to better understand the intervention(s) in CESS. Tools of complex intervention research methodology may provide relevant means in this respect. In a first step, we introduce principles of "complex intervention research" and show how CESS fulfil the criteria of "complex interventions". In a second step, we develop a generic "conceptual framework" for "ethics consultation on request" as standard for many forms of ethics consultation in clinical ethics practice. We apply this conceptual framework to the model of "bioethics mediation" to make explicit the specific structural and procedural elements of this form of ethics consultation on request. In a final step we conduct a comparative analysis of two different types of CESS, which have been subject to evaluation research: "proactive ethics consultation" and "moral case deliberation" and discuss implications for evaluating both types of CESS. CONCLUSION: To make explicit different premises of implemented CESS interventions by means of conceptual frameworks can inform the search for sound empirical evaluation of CESS. In addition, such work provides a starting point for further reflection about what it means to offer "good" CESS.

Professional caregivers' experiences with the Liverpool Care Pathway in dementia: An ethnographic study in a Dutch nursing home.

ABSTRACTObjective:There are few studies on how professional caregivers apply the Liverpool Care Pathway (LCP) in nursing home care for people with dementia. Further, despite critiques in the United Kingdom, the LCP continues to be used in the Netherlands, while, to the best of our knowledge, no studies have been conducted since its implementation. The purpose of the present study was to analyze professional caregivers' experiences with the LCP in this context. METHOD: This article draws on an ethnographic study. Data collection was based on 4 months of ethnographic fieldwork in 2015 in 11 psychogeriatric units of a nursing home in a rural area of the Netherlands. Data collection included participant observation and 25 semistructured audiotaped interviews with specialist elderly care physicians, nursing staff, and a nurse practitioner. RESULTS: We found that professional caregivers appreciate the LCP as a communication tool and as a reminder of care goals. However, the document was deemed too complicated and to cause duplication of work. It was also reported that the LCP did not cover the complexity of care needs that emerge in practice. Actual care needs were prioritized over the LCP, which calls its contribution into question. SIGNIFICANCE OF RESULTS: Overall, the LCP does not match the context of dementia care in the nursing home. While it could be argued that the LCP does not intend to replace good care, its benefits as a reminder and a communication tool need continued consideration in relation to the amount of work it requires as a bureaucratic obligation.

Operationalising ethical challenges in dementia research-a systematic review of current evidence.

Background: the worldwide number of dementia cases is increasing, and this is a trend that is expected to continue as a growing proportion of the population ages. However, conducting research with persons suffering from dementia can be fraught due to fears surrounding research risks in vulnerable populations. This can make seeking approval for studies difficult. As research directly involving persons with dementia is key for the development of evidence-based best practice, the development of a coherent ethical strategy to perform such research feasibly and effectively is of paramount importance. Objective: this paper aims to review and synthesise ethical challenges in performing research with persons who have dementia. Methods: in undertaking a systematic review of the current research literature, we will identify the central issues and arguments characterising research that concerns the ethical dimensions of research participation in the dementia population. Data were analysed using both inductive and deductive content analysis. Ethical considerations in research involving persons with dementia primarily concern the representation of the interests of the person with dementia and protection of their vulnerabilities and rights. Results: a total of 2,894 results were returned from initial searches, following deduplication. In total, 2,458 were excluded at title review, and following abstract review 158 papers remained; 29 papers were included for analysis after full paper review and data extraction. Papers ranged between 1995 and 2013. Conclusion: this review has highlighted a lack of consensus in current research and guidelines addressing these concerns; a clear stance on ethical governance of studies is important for future research and best evidence-based practice in dementia.

Breathlessness and crises in the context of advanced illness: A comparison between COPD and lung cancer patients.

OBJECTIVE: The objective of this study was to explore and contrast the experience and meaning of breathlessness in patients with chronic obstructive pulmonary disease (COPD) or lung cancer at the end of life. METHOD: We conducted a qualitative study embedded in a longitudinal study using topic-guided in-depth interviews with a purposive sample of patients suffering from breathlessness affecting their daily activities due to advanced (primary or secondary) lung cancer or COPD stage III/IV. All interviews were audiotaped, transcribed verbatim, and analyzed using framework analysis. RESULTS: Ten COPD and eight lung cancer patients were interviewed. Both groups reported similarities in their experience. These included exertion through breathlessness throughout the illness course, losses in their daily activities, and the experience of breathlessness leading to crises. The main difference was the way in which patients adapted to their particular illness experience and the resulting crises over time. While COPD patients more likely sought to get their life with breathlessness under control, speaking of daily living with breathlessness under certain conditions, the participating lung cancer patients often faced the possibility of death and expressed a need for security. SIGNIFICANCE OF RESULTS: Breathlessness leads to crises in patients with advanced disease. Although experiences of patients are similar, reactions and coping mechanisms vary and are more related to the disease and the stage of disease.

Priorities for treatment, care and information if faced with serious illness: a comparative population-based survey in seven European countries.

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.

Learning from the public: citizens describe the need to improve end-of-life care access, provision and recognition across Europe.

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.

Choosing care homes as the least preferred place to die: a cross-national survey of public preferences in seven European countries.

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.

Evaluating complex interventions in end of life care: the MORECare statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews.

BACKGROUND: Despite being a core business of medicine, end of life care (EoLC) is neglected. It is hampered by research that is difficult to conduct with no common standards. We aimed to develop evidence-based guidance on the best methods for the design and conduct of research on EoLC to further knowledge in the field. METHODS: The Methods Of Researching End of life Care (MORECare) project built on the Medical Research Council guidance on the development and evaluation of complex circumstances. We conducted systematic literature reviews, transparent expert consultations (TEC) involving consensus methods of nominal group and online voting, and stakeholder workshops to identify challenges and best practice in EoLC research, including: participation recruitment, ethics, attrition, integration of mixed methods, complex outcomes and economic evaluation. We synthesised all findings to develop a guidance statement on the best methods to research EoLC. RESULTS: We integrated data from three systematic reviews and five TECs with 133 online responses. We recommend research designs extending beyond randomised trials and encompassing mixed methods. Patients and families value participation in research, and consumer or patient collaboration in developing studies can resolve some ethical concerns. It is ethically desirable to offer patients and families the opportunity to participate in research. Outcome measures should be short, responsive to change and ideally used for both clinical practice and research. Attrition should be anticipated in studies and may affirm inclusion of the relevant population, but careful reporting is necessitated using a new classification. Eventual implementation requires consideration at all stages of the project. CONCLUSIONS: The MORECare statement provides 36 best practice solutions for research evaluating services and treatments in EoLC to improve study quality and set the standard for future research. The statement may be used alongside existing statements and provides a first step in setting common, much needed standards for evaluative research in EoLC. These are relevant to those undertaking research, trainee researchers, research funders, ethical committees and editors.

'Burden to others' as a public concern in advanced cancer: a comparative survey in seven European countries.

BACKGROUND: Europe faces an enormous public health challenge with aging populations and rising cancer incidence. Little is known about what concerns the public across European countries regarding cancer care towards the end of life. We aimed to compare the level of public concern with different symptoms and problems in advanced cancer across Europe and examine factors influencing this. METHODS: Telephone survey with 9,344 individuals aged ≥16 in England, Flanders, Germany, Italy, Netherlands, Portugal and Spain. Participants were asked about nine symptoms and problems, imagining a situation of advanced cancer with less than one year to live. These were ranked and the three top concerns examined in detail. As 'burden to others' showed most variation within and between countries, we determined the relative influence of factors on this concern using GEE and logistic regression. RESULTS: Overall response rate was 21%. Pain was the top concern in all countries, from 34% participants (Italy) to 49% (Flanders). Burden was second in England, Germany, Italy, Portugal, and Spain. Breathlessness was second in Flanders and the Netherlands. Concern with burden was independently associated with age (70+ years, OR 1.50; 95%CI 1.24-1.82), living alone (OR 0.82, 95%CI 0.73-0.93) and preferring quality rather than quantity of life (OR 1.43, 95%CI 1.14-1.80). CONCLUSIONS: When imagining a last year of life with cancer, the public is not only concerned about medical problems but also about being a burden. Public education about palliative care and symptom control is needed. Cancer care should include a routine assessment and management of social concerns, particularly for older patients with poor prognosis.

'Peace' and 'life worthwhile' as measures of spiritual well-being in African palliative care: a mixed-methods study.

BACKGROUND: Patients with incurable, progressive disease receiving palliative care in sub-Saharan Africa experience high levels of spiritual distress with a detrimental impact on their quality of life. Locally validated measurement tools are needed to identify patients' spiritual needs and evaluate and improve spiritual care, but up to now such tools have been lacking in Africa. The African Palliative Care Association (APCA) African Palliative Outcome Scale (POS) contains two items relating to peace and life worthwhile. We aimed to determine the content and construct validity of these items as measures of spiritual wellbeing in African palliative care populations. METHODS: The study was conducted at five palliative care services, four in South Africa and one in Uganda. The mixed-methods study design involved: (1) cognitive interviews with 72 patients, analysed thematically to explore the items' content validity, and (2) quantitative data collection (n = 285 patients) using the POS and the Spirit 8 to assess construct validity. RESULTS: (1) Peace was interpreted according to the themes 'perception of self and world', 'relationship to others', 'spiritual beliefs' and 'health and healthcare'. Life worthwhile was interpreted in relation to 'perception of self and world', 'relationship to others' and 'identity'. (2) Conceptual convergence and divergence were also evident in the quantitative data: there was moderate correlation between peace and Spirit 8 spiritual well-being (r = 0.46), but little correlation between life worthwhile and Spirit 8 spiritual well-being (r = 0.18) (both p < 0.001). Correlations with Spirit 8 items were weak to moderate. CONCLUSIONS: Findings demonstrate the utility of POS items peace and life worthwhile as distinct but related measures of spiritual well-being in African palliative care. Peace and life worthwhile are brief and simple enough to be integrated into routine practice and can be used to measure this important but neglected outcome in this population.

Living with breathlessness: a survey of caregivers of breathless patients with lung cancer or heart failure.

BACKGROUND: Breathlessness is a common, distressing symptom in patients with advanced disease. With increasing focus on home death for patients, carers are expected to support breathless people at home. Little is known about how carers experience breathlessness and the differences in caring for someone with breathlessness and malignant or non-malignant disease. AIM: To compare experiences of caring for a breathless patient with lung cancer versus those with heart failure and to examine factors associated with caregiver burden and positive caring experiences. DESIGN: Cross-sectional survey of caregivers of breathless patients. SETTING/PARTICIPANTS: Participants were recruited from two London hospitals. INCLUSION CRITERIA: caregivers of patients with breathlessness and heart failure or lung cancer. Measures included self-completion of Short Form version of Zarit Burden Interview, a 'positive caring experiences' scale and Palliative Care Outcome Scale. We compared caregiver reports between heart failure and lung cancer. Multiple regression analyses were used to examine factors related to burden and positive caring experiences. RESULTS: In total, 51 heart failure and 50 lung cancer caregivers were recruited. Most were spouses (72%) and women (80%). Severity of patient breathlessness was similar in both groups. Caregiver concerns were mostly similar across conditions. Higher burden was associated with poorer 'quality of patient care' and worse carer psychological health (R (2) = 0.37, F = 12.2, p = 0.01). Caregiver depression and looking after more breathless patients were associated with fewer positive caring experiences (R (2) = 0.15, F = 4.4, p = 0.04). CONCLUSIONS: Those who care for breathless patients report high levels of unmet needs and burden, equally severe for heart failure and lung cancer caregivers. Caregivers of patients with more severe breathlessness report fewer positive caring experiences and should be targeted by services with increased support in managing this symptom.

Social-cultural factors in end-of-life care in Belgium: a scoping of the research literature.

BACKGROUND: As end-of-life (EoL) care expands across Europe and the world, service developments are increasingly studied. The sociocultural context in which such changes take place, however, is often neglected in research. AIM: To explore sociocultural factors in EoL care in Belgium as represented by the literature. DESIGN: A scoping of the empirical research literature following a systematic search procedure with a focus on thematic analysis based on the literature findings. DATA SOURCES: Searches were carried out in eight electronic databases, five journals, reference lists, and grey literature (through September 2010). Articles informing about sociocultural issues in EoL care were included. RESULTS: One hundred and fifteen original studies met the inclusion criteria, the majority (107) published between 2000 and 2010. Four major themes were: Setting; Caregivers; Communication; and Medical EoL Decisions (the largest category). Minority Ethnic Groups was an emerging theme. Gaps included: research in Wallonia and Brussels; the role and experiences of informal caregivers; issues of access to palliative care; and experiences of minority ethnic groups. There was a paucity of in-depth qualitative studies. CONCLUSIONS: Various sociocultural factors influence the provision of EoL care in Belgium. This country provides a unique opportunity to witness how euthanasia is put into practice when legalized, in a context where palliative care is also highly developed and where many health care institutions have Catholic affiliation, providing an important example to others. Attention to how the sociocultural context affects EoL care adds to the current evidence base of service provision, which is essential in the further development of EoL care.

Episodes of breathlessness: types and patterns - a qualitative study exploring experiences of patients with advanced diseases.

BACKGROUND: Despite the high prevalence and impact of episodic breathlessness, information about characteristics and patterns is scarce. AIM: To explore the experience of patients with advanced disease suffering from episodic breathlessness, in order to describe types and patterns. DESIGN AND PARTICIPANTS: Qualitative design using in-depth interviews with patients suffering from advanced stages of chronic heart failure, chronic obstructive pulmonary disease, lung cancer or motor neurone disease. As part of the interviews, patients were asked to draw a graph to illustrate typical patterns of breathlessness episodes. Interviews were tape-recorded, transcribed verbatim and analysed using Framework Analysis. The graphs were grouped according to their patterns. RESULTS: Fifty-one participants (15 chronic heart failure, 14 chronic obstructive pulmonary disease, 13 lung cancer and 9 motor neurone disease) were included (mean age 68.2 years, 30 of 51 men, mean Karnofsky 63.1, mean breathlessness intensity 3.2 of 10). Five different types of episodic breathlessness were described: triggered with normal level of breathlessness, triggered with predictable response (always related to trigger level, e.g. slight exertion causes severe breathlessness), triggered with unpredictable response (not related to trigger level), non-triggered attack-like (quick onset, often severe) and wave-like (triggered or non-triggered, gradual onset). Four patterns of episodic breathlessness could be identified based on the graphs with differences regarding onset and recovery of episodes. These did not correspond with the types of breathlessness described before. CONCLUSION: Patients with advanced disease experience clearly distinguishable types and patterns of episodic breathlessness. The understanding of these will help clinicians to tailor specific management strategies for patients who suffer from episodes of breathlessness.

MORECare research methods guidance development: recommendations for ethical issues in palliative and end-of-life care research.

BACKGROUND: There is little guidance on the particular ethical concerns that research raises with a palliative care population. AIM: To present the process and outcomes of a workshop and consensus exercise on agreed best practice to accommodate ethical issues in research on palliative care. DESIGN: Consultation workshop using the MORECare Transparent Expert Consultation approach. Prior to workshops, participants were sent overviews of ethical issues in palliative care. Following the workshop, nominal group techniques were used to produce candidate recommendations. These were rated online by participating experts. Descriptive statistics were used to analyse agreement and consensus. Narrative comments were collated. SETTING/PARTICIPANTS: Experts in ethical issues and palliative care research were invited to the Cicely Saunders Institute in London. They included senior researchers, service providers, commissioners, researchers, members of ethics committees and policy makers. RESULTS: The workshop comprised 28 participants. A total of 16 recommendations were developed. There was high agreement on the issue of research participation and high to moderate agreement on applications to research ethics committees. The recommendations on obtaining and maintaining consent from patients and families were the most contentious. Nine recommendations were refined on the basis of the comments from the online consultation. CONCLUSIONS: The culture surrounding palliative care research needs to change by fostering collaborative approaches between all those involved in the research process. Changes to the legal framework governing the research process are required to enhance the ethical conduct of research in palliative care. The recommendations are relevant to all areas of research involving vulnerable adults.

To be involved or not to be involved: a survey of public preferences for self-involvement in decision-making involving mental capacity (competency) within Europe.

BACKGROUND: The Council of Europe has recommended that member states of European Union encourage their citizens to make decisions about their healthcare before they lose capacity to do so. However, it is unclear whether the public wants to make such decisions beforehand. AIM: To examine public preferences for self-involvement in end-of-life care decision-making and identify associated factors. DESIGN: A population-based survey with 9344 adults in England, Belgium, Germany, Italy, the Netherlands, Portugal and Spain. RESULTS: Across countries, 74% preferred self-involvement when capable; 44% preferred self-involvement when incapable through, for example, a living will. Four factors were associated with a preference for self-involvement across capacity and incapacity scenarios, respectively: higher educational attainment ((odds ratio = 1.93-2.77), (odds ratio = 1.33-1.80)); female gender ((odds ratio = 1.27, 95% confidence interval = 1.14-1.41), (odds ratio = 1.30, 95% confidence interval = 1.20-1.42)); younger-middle age ((30-59 years: odds ratio = 1.24-1.40), (50-59 years: odds ratio = 1.23, 95% confidence interval = 1.04-1.46)) and valuing quality over quantity of life or valuing both equally ((odds ratio = 1.49-1.58), (odds ratio = 1.35-1.53)). Those with increased financial hardship (odds ratio = 0.64-0.83) and a preference to die in hospital (not a palliative care unit) (odds ratio = 0.73, 95% confidence interval = 0.60-0.88), a nursing home or residential care (odds ratio = 0.73, 95% confidence interval = 0.54-0.99) were less likely to prefer self-involvement when capable. For the incapacity scenario, single people were more likely to prefer self-involvement (odds ratio = 1.34, 95% confidence interval = 1.18-1.53). CONCLUSIONS: Self-involvement in decision-making is important to the European public. However, a large proportion of the public prefer to not make decisions about their care in advance of incapacity. Financial hardship, educational attainment, age, and preferences regarding quality and quantity of life require further examination; these factors should be considered in relation to policy.

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

BACKGROUND: Home-based models of hospice and palliative care are promoted with the argument that most people prefer to die at home. We examined the heterogeneity in preferences for home death and explored, for the first time, changes of preference with illness progression. METHODS: We searched for studies on adult preferences for place of care at the end of life or place of death in MEDLINE (1966-2011), EMBASE (1980-2011), psycINFO (1967-2011), CINAHL (1982-2011), six palliative care journals (2006-11) and reference lists. Standard criteria were used to grade study quality and evidence strength. Scatter plots showed the percentage preferring home death amongst patients, lay caregivers and general public, by study quality, year, weighted by sample size. RESULTS: 210 studies reported preferences of just over 100,000 people from 33 countries, including 34,021 patients, 19,514 caregivers and 29,926 general public members. 68% of studies with quantitative data were of low quality; only 76 provided the question used to elicit preferences. There was moderate evidence that most people prefer a home death-this was found in 75% of studies, 9/14 of those of high quality. Amongst the latter and excluding outliers, home preference estimates ranged 31% to 87% for patients (9 studies), 25% to 64% for caregivers (5 studies), 49% to 70% for the public (4 studies). 20% of 1395 patients in 10 studies (2 of high quality) changed their preference, but statistical significance was untested. CONCLUSIONS: Controlling for methodological weaknesses, we found evidence that most people prefer to die at home. Around four fifths of patients did not change preference as their illness progressed. This supports focusing on home-based care for patients with advanced illness yet urges policy-makers to secure hospice and palliative care elsewhere for those who think differently or change their mind. Research must be clear on how preferences are elicited. There is an urgent need for studies examining change of preferences towards death.