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Background Care home residents are increasingly frail with complex health and social care needs. Their transfer to hospital at the end-of-life can be associated with unwanted interventions and distress. However, hospitals do enable provision of care that some residents wish to receive. We aimed to explore the factors that influence hospital admission of care home residents who then died in hospital. Methods This study combined in-depth case note review of care home residents dying in two Scottish teaching hospitals during a 6-month period and semi-structured interviews with a purposive sample of 26 care home staff and two relatives. Results During the 6-month period, 109 care home residents died in hospital. Most admissions occurred out-of-hours (69%) and most were due to a sudden event or acute change in clinical condition (72%). Length of stay in hospital before death was short, with 42% of deaths occurring within 3 days. Anticipatory Care Planning (ACP) regarding hospital admission was documented in 44%. Care home staff wanted to care for residents who were dying; however, uncertain trajectories of decline, acute events, challenges of ACP, relationship with family and lack of external support impeded this. Conclusions Managing acute changes on the background of uncertain trajectories is challenging in care homes. Enhanced support is required to improve and embed ACP in care homes and to provide rapid, 24 hours-a-day support to manage difficult symptoms and acute changes. [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: The PACE Steps to Success programme is a complex educational and development intervention to improve palliative care in nursing homes. Little research has investigated processes in the cross-cultural adaptation and implementation of interventions in palliative care across countries, taking account of differences in health and social care systems, legal and regulatory policies, and cultural norms. This paper describes a framework for the cross-cultural development and support necessary to implement such an intervention, taking the PACE Steps to Success programme as an exemplar.Methods: The PACE Steps to Success programme was implemented as part of the PACE cluster randomised control trial in seven European countries. A three stage approach was used, a) preparation of resources; b) training in the intervention using a train-the-trainers model; and c) cascading support throughout the implementation. All stages were underpinned by cross-cultural adaptation, including recognising legal and cultural norms, sensitivities and languages. This paper draws upon collated evidence from minutes of international meetings, evaluations of training delivered, interviews with those delivering the intervention in nursing homes and providing and/or receiving support.Results: Seventy eight nursing homes participated in the trial, with half randomized to receive the intervention, 3638 nurses/care assistants were identified at baseline. In each country, 1-3 trainers were selected (total n = 16) to deliver the intervention. A framework was used to guide the cross-cultural adaptation and implementation. Adaptation of three English training resources for different groups of staff consisted of simplification of content, identification of validated implementation tools, a review in 2 nursing homes in each country, and translation into local languages. The same training was provided to all country trainers who cascaded it into intervention nursing homes in local languages, and facilitated it via in-house PACE coordinators. Support was cascaded from country trainers to staff implementing the intervention.Conclusions: There is little guidance on how to adapt complex interventions developed in one country and language to international contexts. This framework for cross-cultural adaptation and implementation of a complex educational and development intervention may be useful to others seeking to transfer quality improvement initiatives in other contexts. [ABSTRACT FROM AUTHOR]

Background: In nursing care homes (NCHs), the use of end-of-life care (EoLC) medication has traditionally been requested and prescribed on an individual basis during each resident's last days of life. However, some GPs are reluctant to prescribe EoLC medication in anticipation of symptoms occurring if, at the time of their visit, the resident is symptom-free. Even when prescribed, care home staff can experience difficulties obtaining the medication out of hours. This can result in residents not having access to appropriate medications when they are experiencing symptoms. Aim: This audit aimed to assess the feasibility of NCHs with Gold Standards Framework in Care Homes (GSFCH) accreditation keeping EoLC medications 'as stock', rather than having the medication prescribed and dispensed for individual residents when residents became symptomatic. Methods: Meetings were held with nurse managers of four NCHs with GSFCH accreditation, local pharmacists and the hospice pharmacist. A strategy to implement the stock medication was prepared. A baseline review of the notes of deceased residents 6 months pre-implementation was undertaken and information regarding symptoms and EoLC medication extracted. The review continued for 6 months after the stock EoLC medication was obtained. Results: Three NCHs participated. The notes of 92 deceased residents were examined. Fifty-three per cent of decedents were found to have experienced common EoLC symptoms. The numbers with access to EoLC medication increased once the stock medication was in place. However, some residents still had their own drugs dispensed, despite stock drugs being available. Conclusions: There is a need for all dying residents to have access to EoLC medication. The proper facilitation and implementation of EoLC medication 'as stock' into NCHs with expertise in caring for dying people could save monies at a time of NHS austerity measures. If the NCHs had relied solely on the stock medication, the reduction in medication waste would have been significant. The introduction of stock medication would also solve problems associated with obtaining medication out of hours. Conflicts of interest: none [ABSTRACT FROM AUTHOR]

The article discusses the definition of "frail older people," as people over 75 years old with geriatric syndrome, suggesting that frailty in older people should be associated with people having progressive illness and or social needs. It says that frail older people have morbidities complicating variation of degrees of cognitive impairment or dementia. It mentions the updated anticipatory medication guideline for frail older people, who are dying in care homes.

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]

Background: The palliative care needs of older people residing in care homes are not always recognised. Approximately two-thirds of people in care homes have dementia. However, people with advanced dementia are not always recognised as having a terminal condition and, consequently, their end-of-life care needs are not well understood. The Gold Standards Framework in Care Homes (GSFCH) and the Liverpool Care Pathway for the Dying Patient (LCP) (care home version) are advocated to improve the quality of end-of-life care in care homes. However, evidence on the efficacy of such tools to improve outcomes or change practice is lacking. Aim: The aim of this research was to evaluate the impact on the quality of end-of-life care of the GSFCH and LCP in care homes with nursing. Methods: Qualitative interviews were conducted with 22 bereaved relatives/friends before, and 14 bereaved relatives/friends and six care home managers after, implementation of the GSFCH and LCP into seven care homes with nursing. Content analysis guided by the 7Cs of the GSFCH was conducted. Results: Care home staff changed their attitudes about dying. This enabled more informed end-of-life decision-making involving families/friends, staff and GPs. Findings suggest that improvements in care of the dying occurred following implementation of both tools. Conclusion: The GSFCH and LCP improve end-of-life care by influencing end-of-life culture, decision-making and practice. [ABSTRACT FROM AUTHOR]

The objective of this study was to evaluate the key components of services for people with advanced heart failure from multiple perspectives and recommend how care might be delivered in line with UK policies on long-term conditions, palliative and end-of-life care. Serial interviews were conducted over 2 years with patients, case-linked family carers and professionals (n = 162); followed by four focus groups involving patients, carers and key professionals (n = 32). There were 36 patients with advanced heart failure, 30 family carers and 62 professionals included in the study from a UK health region with various heart failure care models. Participants confirmed the value of a key health professional coordinating care, holistic assessment and regular monitoring. A lack of time and resources due to competing priorities in primary care, failure to respond to the fluctuations of a heart failure illness trajectory, concerns about the balance between direct care from specialist nurses or a more advisory role and difficulty in judging when to move towards palliative care hindered consistent access to proactive care. A heart failure care framework, with key stages and service responses, was developed. We conclude that patients with long-term conditions needing palliative care should be identified and managed using pragmatic criteria that include a proactive shift in care goals. [ABSTRACT FROM AUTHOR]

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]

Aim:This paper explores the barriers that needed to be overcome during the process of implementing an integrated care pathway for the last days of life as a way of developing quality end-of-life care in nursing homes. Methods: An action research methodology underpinned the study. Qualitative and quantitative data were collected in eight nursing homes before, during and after the implementation of the care pathway. Findings: Six main barriers were identified: a lack of knowledge of palliative care drugs and control of symptoms at the end of life; lack of preparation for approaching death; not knowing when someone is dying or understanding the dying process; lack of multidisciplinary team working in nursing homes; lack of confidence in communicating about dying; some nursing homes are not ready or able to change. These findings highlight a functional `rehabilitative' culture that may not be so appropriate in the current context of nursing home care, and one that makes implementing an integrated care pathway for the last days of life less straightforward than in other settings. Conclusion: It cannot be presumed that the implementation of a care pathway for the last days of life in nursing homes is straightforward. This study suggests that an action research framework was extremely useful in highlighting and overcoming some obstacles when developing evidence-based practice. Action at both local and public policy level is required to fully address barriers that prevent quality end-of-life care in nursing homes. [ABSTRACT FROM AUTHOR]

Background New out-of-hours healthcare services in the UK are intended to offer simple, convenient access and effective triage. They may be unsatisfactory for patients with complex needs, where continuity of care is important. Aim To explore the experiences and perceptions of out-of-hours care of patients with advanced cancer, and with their informal and professional carers. Design of study Qualitative, community-based study using in-depth interviews, focus groups and telephone interviews. Setting Urban, semi-urban and rural communities in three areas of Scotland. Method Interviews with 36 patients with advanced cancer who had recently used out-of-hours services, and/or their carers, with eight focus groups with patients and carers and 50 telephone interviews with the patient's GP and other key professionals. Results Patients and carers had difficulty deciding whether to call out-of-hours services, due to anxiety about the legitimacy of need, reluctance to bother the doctor, and perceptions of triage as blocking access to care and out-of-hours care as impersonal. Positive experiences related to effective planning, particularly transfer of information, and empathic responses from staff. Professionals expressed concern about delivering good palliative care within the constraints of a generic acute service, and problems accessing other health and social care services. Conclusions Service configuration and access to care is based predominantly on acute illness situations and biomedical criteria. These do not take account of the complex needs associated with palliative and end-of-life care. Specific arrangements axe needed to ensure that appropriately resourced and integrated out-of-hours care is made accessible to such patient groups. [ABSTRACT FROM AUTHOR]

The dynamics surrounding the patient and family facing a death as the 'unit of care' is discussed. Aspects of communication, openness within the family, especially concerning children and teenagers, and factors that enable a family to function under the stress of a loved one's terminal illness are explored. The use of a genogram in palliative care to help to piece together the family dynamics and available support is fundamental to the care for the whole family. [ABSTRACT FROM AUTHOR]

The hospital-based specialist palliative care service is the latest extension of the hospice movement in the UK, bringing the message of specialist palliative care back into the hospital setting. There are now over 200 palliative care services within the acute setting, including 76 specialist palliative care teams. The composition, advantages and disadvantages of such teams are described, and the challenge and importance of evaluating these services are discussed. [ABSTRACT FROM AUTHOR]

Background: Several studies have highlighted the need for improvement in palliative care delivered to older people long-term care facilities. However, the available evidence on how to improve palliative care in these settings is weak, especially in Europe. We describe the protocol of the PACE trial aimed to 1) evaluate the effectiveness and cost-effectiveness of the ‘PACE Steps to Success’ palliative care intervention for older people in long-term care facilities, and 2) assess the implementation process and identify facilitators and barriers for implementation in different countries. Methods: We will conduct a multi-facility cluster randomised controlled trial in Belgium, Finland, Italy, the Netherlands, Poland, Switzerland and England. In total, 72 facilities will be randomized to receive the ‘Pace Steps to Success intervention’ or to ‘care as usual’. Primary outcome at resident level: quality of dying (CAD-EOLD); and at staff level: staff knowledge of palliative care (Palliative Care Survey). Secondary outcomes: resident’s quality of end-of-life care, staff self-efficacy, self-perceived educational needs, and opinions on palliative care. Economic outcomes: direct costs and quality-adjusted life years (QALYs). Measurements are performed at baseline and after the intervention. For the resident-level outcomes, facilities report all deaths of residents in and outside the facilities over a previous four-month period and structured questionnaires are sent to (1) the administrator, (2) staff member most involved in care (3) treating general practitioner, and (4) a relative. For the staff-level outcomes, all staff who are working in the facilities are asked to complete a structured questionnaire. A process evaluation will run alongside the effectiveness evaluation in the intervention group using the RE-AIM framework. Discussion: The lack of high quality trials in palliative care has been recognized throughout the field of palliative care research. This cross-national cluster RCT designed to evaluate the impact of the palliative care intervention for long-term care facilities ‘PACE Steps to Success’ in seven countries, will provide important evidence concerning the effectiveness as well as the preconditions for optimal implementation of palliative care in nursing homes, and this within different health care systems. Trial registration: The study is registered at www.isrctn.com – ISRCTN14741671 (FP7-HEALTH-2013-INNOVATION-1 603111) Registration date: July 30, 2015. [ABSTRACT FROM AUTHOR]

Editorial. Presents the author's opinions about palliative care, as a specialty, and its roots in the evolution of the hospice movement. The need for courses to help people acquire greater skills in the care of dying patients and their families; The application of the terms 'specialist' and 'specialization' to palliative care; Questioning of the term 'specialist' as it applies to palliative care.