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Background: Chronic obstructive pulmonary disease (COPD) is a life-limiting condition with palliative care needs. Despite increasing awareness about the role palliative care can play in care provision for patients with advanced COPD, integration in standard care remains underdeveloped. The unpredictability of the disease progression and misconceptions about palliative care being equivalent to end-of-life care often prevent a timely integrated approach in advanced COPD. Aim: To identify practices designed to increase integration of palliative care in the management of patients with advanced COPD in a respiratory service in Southern Switzerland. Design: A participatory action research approach was chosen and key stakeholders were involved to develop new knowledge and practices, supported by a Theory of Change framework. Data from each cycle and retrospective analysis at the end of the whole research were analysed using thematic analysis. Setting/participants: Five action research cycles with seven healthcare professionals working in palliative or respiratory care settings were conducted. Results: Three elements of integrated palliative care in advanced COPD were identified: multidimensional assessment, healthcare professionals' education and interdisciplinary team meetings, which are the pillars of a new integrated palliative care model for patients with advanced COPD. Conclusions: The new integrated palliative care model in advanced COPD includes essential elements with a focus on patients, healthcare professionals and care delivery. Further research on testing this model in clinical practice, service development, implementation processes and possible outcomes, including evaluation of the financial impact of integrated palliative care is necessary to foster this care approach across all possible settings. [ABSTRACT FROM AUTHOR]

Background: The number of older people dying in long-term care facilities is increasing; however, care at the end of life can be suboptimal. Interventions to improve palliative care delivery within these settings have been shown to be effective in improving care, but little is known about their implementation. Aim: The aim of this study was to describe the nature of implementation strategies and to identify facilitators and/or barriers to implementing palliative care interventions in long-term care facilities. Design: Scoping review with a thematic synthesis, following the ENTREQ guidelines. Data sources: Published literature was identified from electronic databases, including MEDLINE, EMBASE, PsycINFO and CINAHL. Controlled, non-controlled and qualitative studies and evaluations of interventions to improve palliative care in long-term care facilities were included. Studies that met the inclusion criteria were sourced and data extracted on the study characteristics, the implementation of the intervention, and facilitators and/or barriers to implementation. Results: The review identified 8902 abstracts, from which 61 studies were included in the review. A matrix of implementation was developed with four implementation strategies (facilitation, education/training, internal engagement and external engagement) and three implementation stages (conditions to introduce the intervention, embedding the intervention within day-to-day practice and sustaining ongoing change). Conclusion: Incorporating an implementation strategy into the development and delivery of an intervention is integral in embedding change in practice. The review has shown that the four implementation strategies identified varied considerably across interventions; however, similar facilitators and barriers were encountered across the studies identified. Further research is needed to understand the extent to which different implementation strategies can facilitate the uptake of palliative care interventions in long-term care facilities. [ABSTRACT FROM AUTHOR]

Background: People of Black and minority ethnic heritage are more likely to die receiving life supporting measures and less likely to die at home. End-of-life care decision making often involves adult children as advance care planning is uncommon in these communities. Physicians report family distress as being a major factor in continuing with futile care. Aim: To develop a deeper understanding of the perspectives of elders of Black and minority ethnic heritage and their children, about end-of-life conversations that take place within the family, using a meta-ethnographic approach Design: Systematic interpretive exploration using the process of meta-ethnography was utilised. Data sources: CINAHL, MEDLINE, PubMed and PsycINFO databases were searched. Inclusion criteria included studies published between 2005 and 2019 and studies of conversations between ethnic minority elders and family about end-of-life care. Citation snowballing was used to ensure all appropriate references were identified. A total of 13 studies met the inclusion criteria and required quality level using Critical Appraisal Skills Programme. Results: The following four storylines were constructed: 'My family will carry out everything for me; it is trust'; 'No Mum, don't talk like that'; 'I leave it in God's hands'; and 'Who's going to look after us?' The synthesis reflected the dichotomous balance of trust and burden avoidance that characterises the perspectives of Black and minority ethnic elders to end-of-life care planning with their children. [ABSTRACT FROM AUTHOR]

Background: Addressing the concerns of family members is an important aspect of palliative and end-of-life care. One aspect that commonly causes family caregivers concern is the decline of patients' oral fluid intake in the last few days of life. Aim: To map the narratives in which family members' experiences of witnessing the diminishing drinking of a dying relative have been researched, review the findings within each narrative and consider directions for future research. Design: An adapted meta-narrative review approach. Data Sources: The Cumulative Index of Nursing and Applied Health Literature, Medline, PsycINFO, Psycharticles and Scopus databases were searched for relevant research published between January 1982 and December 2017. Quality was assessed using the Quality Assessment and Review Instrument. Results: A total of 22 papers met the inclusion criteria. No study focused specifically on the experiences of family members when witnessing the diminishing drinking of dying relatives. However, research about diminishing drinking was identified within studies broadly focusing on cancer cachexia, clinical decision-making about hydration and/or nutrition and support in a hospice context. The research indicates that family members' experiences of diminishing drinking vary with their views about the significance of drinking, dying well and their expectations of themselves and healthcare professionals. Conclusion: While some understanding of the topic can be inferred from research in related areas, there is a paucity of information specifically about family members' experiences when witnessing the diminishing drinking of a dying relative. [ABSTRACT FROM AUTHOR]

Dementia affects individuals, families and their relationships. While there is increasing evidence about the experiences of family caregivers of people with dementia, relatively little is known of their experiences when their relatives are living in nursing homes with dementia. This narrative literature review aimed to synthesise current knowledge about family caregivers' experience of having relatives living in nursing homes with advanced dementia, particularly focussing on community-dwelling spouses. Using a systematic approach, textual narrative synthesis was undertaken. Four themes were identified: changing relationships, the need for companionship, adjusting to new roles and relationships and anticipating death/looking towards the future. Two additional themes were present only for spouses: changing identity – feeling married, being married; and alone but... The review demonstrates that some aspects of spouses' experiences are different from those of other family caregivers. Longitudinal studies are required to better understand spouses' motivations to continue caring in this context and to find ways of supporting them. [ABSTRACT FROM AUTHOR]

Objectives: Although the experiences of family caregivers have received attention, little research has specifically explored caregivers’ confidence. Evidence shows that caregivers of hospice patients do not feel confident or prepared to care for relatives or friends who die at home. Aim: We aimed to elicit the views, feelings, and experiences of primary caregivers who provide unpaid care to dying family members in the home setting to better understand what contributes to their confidence during end-of-life care. Design: The exploratory, cross-sectional design involved semistructured, in-depth interviews. A narrative analysis that focused on form and content was chosen to analyze the data. Participants: Sixteen bereaved caregivers (14 individuals and 1 brother/sister dyad) from the midwestern United States who received support from 1 hospice participated in the study. Results: Four storylines running longitudinally through the interviews were identified as shaping, giving meaning to, and contextualizing caregivers’ confidence: values/relationships, stories of terminal illness, needs, and support. Caregivers’ confidence is shaped by the terminal illness of the person for whom they care and caregivers’ values and relationships. It is also influenced by their needs and the sources and strength of support they receive. Conclusions: This research developed understanding about family provision of end-of-life care at home. Better comprehension of caregivers’ experiences can help professional hospice and palliative care staff to understand what aids caregivers to be more confident. [ABSTRACT FROM AUTHOR]

Background: Nursing homes are among the most common places of death in many countries. Aim: To determine the quality of dying and end-of-life care of nursing home residents in six European countries. Design: Epidemiological survey in a proportionally stratified random sample of nursing homes. We identified all deaths of residents of the preceding 3-month period. Main outcomes: quality of dying in the last week of life (measured using End-of-Life in Dementia Scales – Comfort Assessment while Dying (EOLD-CAD)); quality of end-of-life care in the last month of life (measured using Quality of Dying in Long-Term Care (QoD-LTC) scale). Higher scores indicate better quality. Setting/participants: Three hundred and twenty-two nursing homes in Belgium, Finland, Italy, the Netherlands, Poland and England. Participants were staff (nurses or care assistants) most involved in each resident’s care. Results: Staff returned questionnaires regarding 1384 (81.6%) of 1696 deceased residents. The End-of-Life in Dementia Scales – Comfort Assessment while Dying mean score (95% confidence interval) (theoretical 14–42) ranged from 29.9 (27.6; 32.2) in Italy to 33.9 (31.5; 36.3) in England. The Quality of Dying in Long-Term Care mean score (95% confidence interval) (theoretical 11–55) ranged from 35.0 (31.8; 38.3) in Italy to 44.1 (40.7; 47.4) in England. A higher End-of-Life in Dementia Scales – Comfort Assessment while Dying score was associated with country (p = 0.027), older age (p = 0.012), length of stay ⩾1 year (p = 0.034), higher functional status (p < 0.001). A higher Quality of Dying in Long-Term Care score was associated with country (p < 0.001), older age (p < 0.001), length of stay ⩾1 year (p < 0.001), higher functional status (p = 0.002), absence of dementia (p = 0.001), death in nursing home (p = 0.033). Conclusion: The quality of dying and quality of end-of-life care in nursing homes in the countries studied are not optimal. This includes countries with high levels of palliative care development in nursing homes such as Belgium, the Netherlands and England. [ABSTRACT FROM AUTHOR]

Background: In dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor. Aim: To evaluate the effectiveness of advance care planning with family carers in dementia care homes. Design: Paired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff. Setting/participants: A total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions. Results: The primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (-10.5, 95% confidence interval: -16.4 to -4.7; p < 0.001). Conclusion: Advance care planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication between family carers and formal care providers. [ABSTRACT FROM AUTHOR]

Background: Caring for dying people can contribute to moral distress experienced by healthcare professionals. Moral distress can occur when this caring is restricted by organisational processes, resources or the provision of futile care. These factors apply to end of life care in nursing homes but research is lacking. Aim: To describe how nursing home staff experience moral distress when caring for residents during and at the end of life. Methods: An interpretive descriptive design, using the critical incident technique in semi-structured interviews to collect data from nursing home staff. Data were analysed using a thematic analysis approach. Setting: Four nursing homes in one large metropolitan area. Participants: A total of 16 staff: 2 nurse managers, 4 nurses and 10 care assistants. Findings: Participants described holding ‘good dying’ values which influenced their practice. The four practice-orientated themes of advocating, caring, communicating and relating with residents were found to influence interactions with residents, relatives, general practitioners, and colleagues. These led staff to be able to ‘do the right thing’ or to experience ‘powerlessness’, which could in turn lead to staff perceiving a ‘bad death’ for residents. Conclusion: When there are incongruent values concerning care between staff and others involved in the care of residents, staff feel powerless to ‘do the right thing’ and unable to influence care decisions in order to avoid a ‘bad death’. This powerlessness is the nature of their moral distress. [ABSTRACT FROM AUTHOR]

The article discusses a study exploring the experiences of spouse caregivers of people with advanced dementia living in nursing homes, conducted in two nursing homes in Northern England and published in 2013. Based from their findings, the researchers recommend making nursing home staff aware that spouse caregivers may be struggling with their role and status. They further recommend the inclusion of communication skills in educational programmes for nursing home staff.

The article presents the systematic review of the effect of implementing end of life care policy within nursing care homes. It is mentioned that the aim of this article is to identify the impact of this policy. The study shows the result that improvements are occurred in resident outcomes in relation with staff recognition, and meeting residents' needs for end of life care. It concludes that limited evidence on improved outcomes is obtained.

The article discusses a research exploring the views and expectations about living and dying among care home residents and how their views are affected by their experience in the care home. Study reveals that people living in care homes are not different from the rest of the population and the deaths of other residents do not shape their views and priorities for end-of-life care. The findings can help introduce, discuss and tailor existing frameworks and programmes of end-of-life care.

Background: Action research is beginning to be utilized within palliative care research to address questions concerned with practice and organizational change. An understanding of appropriate evaluation practices is required in order to ensure that high-quality action research is conducted.Aim: The aim of this paper is to present an account of participatory action research and illustrate the way in which evaluation approaches are integrated within this methodology.Design: Participatory action research will be described identifying its origins, principles and its relationship with evaluation frameworks. The key features of the evaluation process in regard to participatory research are outlined.Setting: Two studies are presented which illustrate the integration of evaluation within a participatory action research framework. The first approach uses a before–after summative evaluation approach in a study undertaken to develop palliative care practice within a UK nursing home context. The evaluation focused upon the impact of the intervention. The second study utilized similar methods and addressed the process of the action research using the Äldreväst Sjuhärad (ÄVS) model to evaluate participation in a peer education programme for advance care planning amongst older adults.Results: These examples of evaluation within action research illustrate how diverse methods can be used. The use of a specific participatory evaluation model ensures the process reflects the underlying participatory principle of action research.Conclusions: Evaluation processes are integral to action research approaches. The specific evaluative methods adopted will reflect the nature and focus of the evaluation being undertaken. [ABSTRACT FROM PUBLISHER]

Older people who live alone face particular challenges if they are to age and die well in the place and manner of their choosing. This discussion paper examines the experiences and needs of older people living alone towards the end of life. The paper focuses on the UK, given recent policy and service development initiatives there which emphasize home as a place of support and care; the promotion of independence; ensuring choice and decision making; and equity. These initiatives do not acknowledge diversity in the older population and make little provision to meet the specific needs that older people living alone may have as they approach the end of life. We identify three broader social factors that influence whether older people who live alone can remain at home until the end of their lives. The first factor is the physical environment; the second concerns their material environment; and the third relates to their social environment and their access to informal and formal care services. In future, palliative care research of relevance to older people should consider living arrangements as an important variable and be cognisant of the way in which wider social issues constrain the quality of end-of-life care that those living alone in older age receive. [ABSTRACT FROM AUTHOR]

Nursing homes are a common site of death, but older residents receive variable quality of end-of-life care. We used a mixed methods design to identify external influences on the quality of end-of-life care in nursing homes. Two qualitative case studies were conducted and a postal survey of 180 nursing homes surrounding the case study sites. In the case studies, qualitative interviews were held with seven members of nursing home staff and 10 external staff. Problems in accessing support for end-of-life care reported in the survey included variable support by general practitioners (GPs), reluctance among GPs to prescribe appropriate medication, lack of support from other agencies, lack of out of hours support, cost of syringe drivers and lack of access to training. Most care homes were implementing a care pathway. Those that were not rated their end-of-life care as in need of improvement or as average. The case studies suggest that critical factors in improving end-of-life care in nursing homes include developing clinical leadership, developing relationships with GPs, the support of ‘key’ external advocates and leverage of additional resources by adoption of care pathway tools. [ABSTRACT FROM PUBLISHER]

Action research in health care is a relatively new research approach, which is adopted when one aim of the research is to bring about change in practice and to research the process of that change. This paper describes the way action research, as a research methodology, can be used to develop palliative care knowledge in generalist care settings. An overview of action research is presented and its relationship to more conventional research paradigms. Two action research projects, undertaken to develop knowledge about end-of-life care for older people in care homes, are used to illustrate the key principles of action research, methods of data collection and data analysis. Finally, the challenges of such, utilising an action research approach and its strengths, are discussed. [ABSTRACT FROM AUTHOR]

Choice is a key theme in current government policy within the United Kingdom. Present as an important value for the delivery of public services, of particular interest here is choice at the end of life. By focusing on older people residing in care homes, a number of questions are raised about the implications of this aspiration. What does choice mean for older people who are societally marginalised and live in a care setting that sits, primarily, outside public provision? Aspects of choice are explored here with respect to when choice is offered, what care is provided and where this occurs. Both the context of care and the population to whom choice is to be offered shape the nature of choice as is outlined here. [ABSTRACT FROM PUBLISHER]

This paper aims to examine the loss of weight and loss of appetite as ‘problems’ experienced by patients with advanced cancer and those that care for them. It reports the results of a systematic search of the literature and presents the findings as a narrative review. Research to date has focused upon charting the prevalence and incidence of these symptoms, but little empirical work has been conducted to investigate how patients and carers experience these problems. There is some evidence to suggest that anorexia may be more distressing for those caring for the patient than the person suffering from the symptom itself. Understanding the reason for this anguish requires an appreciation of the meaning of food refusal and constitutes the first step towards informing the development of effective interventions. Such exploratory work is mandatory if health professionals wish to move beyond speculation and deliver interventions that provide meaningful benefits for the cancer patient and their family. [ABSTRACT FROM PUBLISHER]

The provision of end-of-life care within nursing and residential care homes is of concern to policy makers and specialist palliative care providers. There is evidence of an increasing number of initiatives involving clinical nurse specialists (CNS) with the care of residents within these care settings, but the extent to which this is occurring in the UK has not been documented. A survey of 730 community CNS in palliative care was undertaken to describe the extent to which these practitioners are involved with the care of residents in nursing and residential care homes and the nature of this work. Although 92% of the CNS surveyed had worked with nursing homes and 80% of the CNS with residential care homes, the responses showed that this work was primarily reactive and undertaken infrequently. The majority of the work undertaken by CNS involved caring for patients with malignant conditions with a clinical focus addressing the management of physical symptoms. [ABSTRACT FROM PUBLISHER]

The relationship between research and practice development has not always been a close one. Researchers focus upon the production of new knowledge to create the evidence base upon which the development of practice is taken forward, usually by other people within the clinical area. Work being undertaken at the Macmillan Practice Development Unit (MPDU) in London about the dissemination and utilisation of evidence concerning the management of breathlessness has raised a number of issues. These concern the confidence of practitioners to take on new approaches within the practice sphere, their desire for accredited education, and questions about responsibility for, and ownership of, the dissemination process. Different values about the nature of learning are explored here, which may explain the dissonance between practitioner and researcher expectations about the dissemination and utilisation process. [ABSTRACT FROM PUBLISHER]