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Background: Palliative care is insufficiently integrated in the continuum of care for older people. It is unclear to what extent healthcare policy for older people includes elements of palliative care and thus supports its integration. Aim: (1) To develop a reference framework for identifying palliative care contents in policy documents; (2) to determine inclusion of palliative care in public policy documents on healthcare for older people in 13 rapidly ageing countries. Design: Directed documentary analysis of public policy documents (legislation, policies/strategies, guidelines, white papers) on healthcare for older people. Using existing literature, we developed a reference framework and data extraction form assessing 10 criteria of palliative care inclusion. Country experts identified documents and extracted data. Setting: Austria, Belgium, Canada, Czech Republic, England, Japan, Mexico, Netherlands, New Zealand, Singapore, Slovenia, South Korea, Spain. Results: Of 139 identified documents, 50 met inclusion criteria. The most frequently addressed palliative care elements were coordination and continuity of care (12 countries), communication and care planning, care for family, and ethical and legal aspects (11 countries). Documents in 10 countries explicitly mentioned palliative care, nine addressed symptom management, eight mentioned end-of-life care, and five referred to existing palliative care strategies (out of nine that had them). Conclusions: Health care policies for older people need revising to include reference to end-of-life care and dying and ensure linkage to existing national or regional palliative care strategies. The strong policy focus on care coordination and continuity in policies for older people is an opportunity window for palliative care advocacy. [ABSTRACT FROM AUTHOR]

It seems probable that some form of medically-assisted dying will become legal in England and Wales in the foreseeable future. Assisted dying Bills are at various stages of preparation in surrounding jurisdictions (Scotland, Republic of Ireland, Isle of Man, Jersey), and activists campaign unceasingly for a change in the law in England and Wales. There is generally uncritical supportive media coverage, and individual autonomy is seen as the unassailable trump card: 'my life, my death'. However, devising a law which is 'fit for purpose' is not an easy matter. The challenge is to achieve an appropriate balance between compassion and patient autonomy on the one hand, and respect for human life generally and medical autonomy on the other. More people should benefit from a change in the law than be harmed. In relation to medically-assisted dying, this may not be possible. Protecting the vulnerable is a key issue. Likewise, not impacting negatively on societal attitudes towards the disabled and frail elderly, particularly those with dementia. This paper compares three existing models of physician-assisted suicide: Switzerland, Oregon (USA), and Victoria (Australia). Vulnerability and autonomy are discussed, and concern expressed about the biased nature of much of the advocacy for assisted dying, tantamount to disinformation. A 'hidden' danger of assisted dying is noted, namely, increased suffering as more patients decline referral to palliative-hospice care because they fear they will be 'drugged to death'. Finally, suggestions are made for a possible 'least worse' way forward. One solution would seem to be for physician-assisted suicide to be the responsibility of a stand-alone Department for Assisted Dying overseen by lawyers or judges and operated by technicians. Doctors would be required only to confirm a patient's medical eligibility. Palliative-hospice care should definitely not be involved, and healthcare professionals must have an inviolable right to opt out of involvement. There is also an urgent need to improve the provision of care for all terminally ill patients. [ABSTRACT FROM AUTHOR]

There has been an increasing acknowledgement in the UK of the importance of recognising frailty as a condition that leaves older people vulnerable to dramatic, sudden changes in health triggered by seemingly small events. In policy, the approach to managing frailty is often an emphasis on staying well with limited consideration to frailty as an end-of-life phase. Meanwhile, discharge from hospital continues to be complex. Overstretched acute hospitals are juxtaposed with community and social services that struggle to keep up with the demand of those being discharged and the labelling of older people as "bed blockers" at the centre of delayed discharges. This paper reports a study underpinned by constructivist grounded theory methodology, with the aim of exploring the experiences and perceptions of stakeholders. Semistructured interviews were conducted with 57 participants including patients, their informal carer(s), community hospital staff, community health professionals, and care home managers. The core category of "the drive to discharge conveyor belt" was derived from data analysis. A significant finding of this study was that of the carer, their burden, and their intrinsic role in facilitating discharge, filling in gaps in services, coordinating services, and enabling the patient to stay at home, with little consideration of their choices or autonomy. The "drive to discharge" impacts older people, their informal carers, and health professional. This study suggests how they may be supported, through an ethical lens. [ABSTRACT FROM AUTHOR]

Purpose - Service users very often interpret and respond to their experiences of death, dying and bereavement through a religious or spiritual lens. However, recent trends in religion and belief have influenced how professionals respond to indicators such as faith. Since the post-war years in Britain and due to the transfer of services from church to state, as well as the change in the religious landscape, language has largely secularized. When people start addressing religion and belief again, they lack the appropriate literacy to do so, this is termed religious literacy by Dinham (2015). The purpose of this paper is to explore how professionals in end of life (EOL) care respond to service user's religious and spiritual indicators, through the lens of religious literacy. Design/methodology/approach - The paper draws from an ethnographic study undertaken across hospices in England, UK. In this study, healthcare professionals (HCPs) were observed for one calendar year. Findings - Results show that lack of religious literacy on the part of HCPs may lead to subtle and unintentional microaggression. Three types of indications of microinvalidation have been noted: verbal, non-verbal and environmental. Originality/value - This paper innovates in offering a first-hand phenomenological interpretation of observations in the field. The research data capture visually the impact of lack of religious literacy, an achievement which adds to the dialogue about service user rights in EOL care. [ABSTRACT FROM AUTHOR]

The aim of this paper was to understand the needs of family caregivers and professionals supporting people living with dementia with eating and drinking difficulties towards the end of life and the strategies they use to overcome them. A total of 41 semi‐structured interviews with family caregivers (n = 21) and professionals (n = 20) were conducted in London and surrounding areas of England. Interviews were audio‐recorded and transcribed verbatim. Four themes were identified: caregivers accessing and seeking help, perceived priorities of care, professionals' supportiveness and educational role, and strategies. Caregivers often struggle as they are not aware of the eating and drinking difficulties associated with dementia's progression. Care can change over time with families prioritising a person's comfort towards the end of life rather than ensuring a particular level of nutrition. Mutual support is required by both professionals and caregivers to enhance the care of the person living with dementia. Cognitive difficulties are often behind initial eating and drinking challenges in dementia, whereas physical challenges take over towards the later stages. Flexibility and creativity are key to adapting to changing needs. There is a need to raise awareness of the eating and drinking challenges associated with the progression of dementia. Professionals can help caregivers embark on the transition towards focussing on comfort and enjoyment of eating and drinking near the end of life rather than nutrition. This is particularly relevant for those caring for a relative living at home. Caregivers' input is needed to tailor professionals' recommendations. [ABSTRACT FROM AUTHOR]

Objective: Increasingly the views of young people are sought when improving healthcare; however, it is unclear how they shape policy or practice. This paper presents a consultation with young people commissioned by the National Institute for Health and Care Excellence (NICE) to inform clinical guidelines for paediatric palliative care (end-of-life care for infants, children and young people).Methods: The consultation involved qualitative thematic analysis of data from 14 young people (aged 12-18 years) with a life-limiting or life-threatening condition who took part in focus groups or interviews. The topics explored were predefined by NICE: information and communication; care planning; place of care; and psychological care. Data collection consisted of discussion points and activities using visual cues and was informed by a pilot consultation group with five young adults (aged 19-24 years). Findings were shared with participants, and feedback helped to interpret the findings.Results: Four overarching themes were identified, cutting across the predetermined topic areas: being treated as individuals with individual needs and preferences; quality of care more important than place; emotional well-being; and living as a young person. Importantly, care planning was viewed as a tool to support living well and facilitate good care, and the young people were concerned less about where care happens but who provides this.Conclusion: Young people's priorities differ from those of parents and other involved adults. Incorporating their priorities within policy and practice can help to ensure their needs and preferences are met and relevant research topics identified. [ABSTRACT FROM AUTHOR]

Delivering optimal and equitable palliative care is an international challenge. There are few cross-national comparisons examining challenges in expanding palliative care along public health lines. This paper presents a critical review of palliative care in the USA and England, which share similar challenges but have different contexts of healthcare. Beyond some obvious differences in the organisation of palliative care, a set of underlying common issues can be identified. A key tension in both is balancing attention ‘downstream’ in the dying phase, as well as ‘upstream’ earlier in the course of serious illness. In both, the dominant models of palliative care provision have resulted in excellent care towards the end of life for some patients, but there remain major deficiencies in care for the majority. England has a National Strategy for End-of-life care; the US has no equivalent, although a number of influential agencies have published statements. Achieving a public health approach in palliative care requires international consensus on the meaning and target population of palliative care, replacement of prognosis based understandings of entitlement to palliative care with a needs-based approach and development of an evidence base for cost-effective partnerships between providers across the specialist–generalist divide. [ABSTRACT FROM AUTHOR]

Background: Limited access to, understanding of, and trust in paper-based patient information is a key factor influencing paramedic decisions to transfer patients nearing end-of-life to hospital. Practical solutions to this problem are rarely examined in research. This paper explores the extent to which access to, and quality of, patient information affects the care paramedics provide to patients nearing end-of-life, and their views on a shared electronic record as a means of accessing up-to-date patient information. Method: Semi-structured interviews with paramedics (n = 10) based in the north of England, drawn from a group of health and social care professionals (n = 61) participating in a study exploring data recording and sharing practices in end-of-life care. Data were analysed using thematic analysis. Results: Two key themes were identified regarding paramedic views of patient information: 1) access to information on patients nearing end-of-life, and 2) views on the proposed EPaCCS. Paramedics reported they are typically unable to access up-to-date patient information, particularly advance care planning documents, and consequently often feel they have little option but to actively treat and transport patients to hospital – a decision not always appropriate for, or desired by, the patient. While paramedics acknowledged a shared electronic record (such as EPaCCs) could support them to provide community-based care where desired and appropriate, numerous practical and technical issues must be overcome to ensure the successful implementation of such a record. Conclusions: Access to up-to-date patient information is a barrier to paramedics delivering appropriate end-of-life care. Current approaches to information recording are often inconsistent, inaccurate, and inaccessible to paramedics. Whilst a shared electronic record may provide paramedics with greater and timelier access to patient information, meaning they are better able to facilitate community-based care, this is only one of a series of improvements required to enable this to become routine practice. [ABSTRACT FROM AUTHOR]

Purpose The purpose of this study was to explore compassionate leadership with those involved in leading system-wide end-of-life care. Its purpose was to: define compassionate leadership in the context of palliative and end-of-life care; collect accounts of compassionate leadership activity from key stakeholders in end-of-life and palliative care; and identify examples of compassionate leadership in practice.Design/methodology/approach Four focus groups involving staff from a range of healthcare organisations including hospitals, hospices and community teams were conducted to access the accounts of staff leading palliative and end-of-life care. The data were analysed thematically.Findings The themes that emerged from the data included: the importance of leadership as role modelling and nurturing; how stories were used to explain approaches to leading end-of-life care; the nature of leadership as challenging existing practice; and a requirement for leaders to manage boundaries effectively. Rich and detailed examples of leadership in action were shared.Research limitations/implications The findings indicate that a relational approach to leadership was enacted in a range of palliative and end-of-life care settings.Practical implications Context-specific action learning may be a means of further developing compassionate leadership capability in palliative and end-of-life care and more widely in healthcare settings.Originality/value This paper presents data indicating how compassionate leadership, as a form of activity, is envisaged and enacted by staff in healthcare. [ABSTRACT FROM AUTHOR]

The article summarizes several published research articles relevant to palliative care. It includes the synopses of a paper in "Palliative Medicine" by D. Clark et al investigating the proportion of in-patients in Scottish hospitals that die within certain time points, a report by M. R. O'Brien and colleagues on the experiences of people with motor neurone disease (MND) and a paper by H. Golla et al stating Germany's perception of palliative care.

Objectives: There is a growing consensus worldwide that palliative care needs to be both more inclusive of conditions other than cancer and to improve. This paper explores some common challenges currently faced by professionals providing palliative care for patients with either cancer or dementia across five countries. Method: One focus group (n = 7) and 67 interviews were conducted in 2012 across five countries: England, Germany, Italy, the Netherlands and Norway, with professionals from dementia, cancer and palliative care settings. Results: The interviews revealed five common challenges faced across the five countries: communication difficulties (between services; and between professionals, and patients and their families); the variable extent of structural/functional integration of services; the difficulties in funding of palliative care services; problematic processes of care (boundaries, definitions, knowledge, skills and inclusiveness) and, finally, time constraints. Conclusion: These are not problems distinct to palliative care, but they may have different origins and explanations compared to other areas of health care. This paper explored deeper themes hidden behind a discourse about barriers and facilitators to improving care. [ABSTRACT FROM AUTHOR]

Background: The Ambitions for Palliative and End of Life Care is a national framework for local action in England co-produced by over 30 partners; little research has been conducted on how the Framework is received and used. This study sought to examine and support how people understand, interpret, and implement the Framework. Methods: A multi-stage qualitative methodology involving four stages of data collection: (1) case study interviews, (2) focus groups, (3) interactive workshops, and (4) Evidence Cafés. From initial interviews, ongoing thematic data analysis informed the design and focus of subsequent stages as part of a process of knowledge transfer. Results: A practical resource to support service provision and development was produced; a grab-and-go guide called "Small Steps, Big Visions". It focuses on the eight foundations in the Ambitions Framework, with additional guidance on collaboration and partnership working, and sharing learning. Each foundation is presented with a 'what' (definition), 'ask' (prompt questions), and 'examples in action' (drawn from case studies). Conclusions: Research can contribute to policy implementation to advance palliative and end of life care. The engagement and input of those responsible for implementation is key. [ABSTRACT FROM AUTHOR]

Palliative and end-of-life care in England has undergone some remarkable transformations across the course of less than half a century and can be seen as a useful case study with which to understand international trends and challenges. This paper examines some of the long term influences which led to the emergence, for the very first time, of an End-of-Life Care Strategy in England. It revisits the critical contribution of Cicely Saunders to the development of a theoretical framework for palliative care before examining the gradual and as yet incomplete transformation of ‘palliative care’ into ‘end-of-life care’ which is occurring internationally. The paper then turns to examine two key challenges in contemporary end-of-life care, looking at how these are being addressed in England and forecasting the possible direction of travel in the future. [ABSTRACT FROM AUTHOR]

This paper reports on a therapeutic creative writing project undertaken at Kings College London and University College Hospital London, funded by Arts Council England. The project sought to increase understanding of experiences of personal expressive and explorative writing by cancer patients receiving palliative care. Narrative methods were used to analyse and interpret patients' written and oral (transcripts of semistructured interviews) responses, researchers' field notes and written responses of staff. These indicated that writing: (1) facilitated patients' ability and opportunity to discover what they thought, felt, remembered; (2) enhanced their awareness of, and ability to express, issues to which focused attention needed to be paid; and (3) offered satisfaction and fulfilment of creative expression and exploration and the production of writings which to them and close others were vital. Illuminatively drawing upon patients' writings and responses, this paper is underpinned by discussion of therapeutic writing and its relationship to creative writing, with reference to a range of previous research. [ABSTRACT FROM AUTHOR]

Palliative care should be fully accessible to all those who need it. However, some individuals may be disadvantaged from a palliative care perspective, for a variety of different reasons. This paper brings together three practitioners working in different professional roles who all have a similar interest: palliative care for people with intellectual disabilities. Each practitioner will describe how they are developing local, practice-based initiatives in an effort to improve palliative care for this marginalised group in North Staffordshire, congruent with local and national policies. [ABSTRACT FROM AUTHOR]

Background: There is a lack of research about the experiences and impact of having a sibling with a life-limiting condition. Studies focus on the sibling experience during childhood but the experience and impact during adulthood is unknown despite the increased life-expectancy of children with life-limiting conditions. Aim: To explore adult siblings' perspectives on the experience of having a sister/brother with a childhood life-limiting condition and to identify their perceived needs and preferences for support. Design: A qualitative exploratory study design with data generated by semi-structured interviews and analysed using reflexive thematic analysis, underpinned by interpretivism. Setting/participants: Twenty-two siblings (17–42 years old) were recruited via a children's hospice in England. Results: The experience of having a sibling with a life-limiting condition changes over time in response to how understandings of the meaning of a life-limiting condition develop and changing roles/relationships with parents and siblings. These experiences have an enduring impact on adult sibling's mental health which is compounded by their unmet (and sometimes unrecognised) support needs in adolescence and adulthood. Siblings described the importance of support continuing into adulthood with a focus on the provision of psychotherapy and peer support. Conclusions: Having a sister/brother with a childhood life-limiting condition appeared to have a significant and ongoing impact on adult siblings but their support needs, particularly for psychotherapy and peer support, are overlooked. The findings highlight the importance of ensuring siblings are included in family assessments and that family-based interventions are developed to promote sibling-parent relationships. [ABSTRACT FROM AUTHOR]

Background: People living with severe mental illness (SMI) face significant health inequalities, including in palliative care. Advance Care Planning (ACP) is widely recommended by palliative care experts and could reduce inequalities. However, implementing ACP with this group is challenging. Electronic Palliative Care Coordination Systems such as Coordinate my Care (CMC) have been introduced to support documentation and sharing of ACP records with relevant healthcare providers. This study explores the use of CMC amongst those with SMI and aims to describe how those with a primary diagnosis of SMI who have used CMC for ACP, and makes recommendations for future research and policy. Method: A retrospective observational cohort analysis was completed of CMC records created 01/01/2010–31/09/2021 where the service user had a primary diagnosis of SMI, with no exclusions based on comorbidities. Descriptive statistics were used to report on characteristics including: age, diagnosis, individual prognosis and resuscitation status. Thematic analysis was used to report on the content of patients' statements of preference. Results: 1826 records were identified. Of this sample most (60.1%) had capacity to make treatment decisions, 47.8% were aged under 70, 86.7% were given a prognosis of 'years' and most (63.1%) remained for full cardio-pulmonary resuscitation in the event of cardio-pulmonary arrest. Records with completed statements of preferences (20.3%) contained information about preferences for physical and mental health treatment care as well as information about patient presentation and capacity, although most were brief and lacked expression of patient voice. Discussion: Compared to usual CMC users, the cohort of interest are relatively able, younger people using CMC to make long-term plans for active physical and mental health treatment. ADM is a service user-driven process, and so it was expected that authentic patient voice would be expressed within statements of preference, however this was mostly not achieved. Conclusions: This digital tool is being used by people with SMI but to plan for more than palliative care. This cohort and supporting professionals have used CMC to plan for longer term physical and mental healthcare. Future research and policy should focus on development of tailored digital tools for people with SMI to plan for palliative, physical and mental healthcare and support expression of patient voice. [ABSTRACT FROM AUTHOR]

Background: Older people account heavily for palliative care needs at the population level and are growing in number as the population ages. There is relatively little high-quality data on symptom burden and quality of life, since these data are not routinely collected, and this group are under-recruited in primary research. It is unclear which measurement tools are best suited to capture burdens and experience. Methods: We recruited a cohort of 221 patients aged 75 + years with poor prognosis who had an unplanned admission via the emergency department in a large urban hospital in England between 2019 and 2020. Risk of dying was assessed using the CriSTAL tool. We collected primary data and combined these with routine health records. Baseline clinical data and patient reported quality of life outcomes were collected on admission and reassessed within the first 72 h of presentation using two established tools: EQ-5D-5 L, EQ-VAS and the Integrated Palliative Outcomes Scale (IPOS). Results: Completion rate was 68% (n = 151) and 33.1% were known to have died during admission or within 6 months post-discharge. The vast majority (84.8%) reported severe difficulties with at least one dimension of EQ-5D-5 L at baseline and improvements in EQ-VAS observed at reassessment in 51.7%. The baseline IPOS revealed 78.2% of patients rating seven or more items as moderate, severe or overwhelming, but a significant reduction (-3.6, p < 0.001) in overall physical symptom severity and prevalence was also apparent. No significant differences were noted in emotional symptoms or changes in communication/practical issues. IPOS total score at follow up was positively associated with age, having comorbidities (Charlson index score > = 1) and negatively associated with baseline IPOS and CriSTAL scores. Conclusion: Older people with poor prognosis admitted to hospital have very high symptom burden compared to population norms, though some improvement following assessment was observed on all measures. These data provide valuable descriptive information on quality of life among a priority population in practice and policy and can be used in future research to identify suitable interventions and model their effects. [ABSTRACT FROM AUTHOR]

Experience feedback data is increasingly recognised as being helpful in improving healthcare services, and in meeting patient and family needs. This end-of-life care project, based on the principles of appreciative inquiry, sought to learn from the experiences of bereaved people whose relative had died in an acute hospital setting. Informal feedback, offered during a routine telephone call, was thematically analysed and interpreted in an appreciative manner. Confirmatory representations of caring practices and behaviours were identified, categorised and disseminated in a way that enabled staff to come to know and understand end-of-life care at its best, rather than as a set of problematised events. The findings served as a benchmark for individuals and teams to assess and progress their practice reflectively. The authors conclude that staff receptiveness to informal bereaved family feedback may be enhanced by focusing on the positive qualities of end-of-life care within existing practices. [ABSTRACT FROM AUTHOR]

Objective: Conducting research with the bereaved presents an immediate ethical challenge, as they are undoubtedly a vulnerable group, associated with high levels of distress and susceptible to both physical and mental health issues. A comprehensive understanding of the potential therapeutic benefits for bereaved relatives participating in palliative care research is limited, and therefore the ethics of engaging this group remain questionable.Method: This paper describes a secondary analysis of qualitative data collected in the Care of the Dying Evaluation (CODE) project, examining the experiences of patients who died at home. It explores the motivations and potential benefits for bereaved relatives participating in research with reference to the recently developed concepts in bereavement theory. Cognitive interviews were conducted with 15 bereaved relatives and secondary analysis using a content analysis framework was employed to classify the data.Results: The results center around six recurring concepts identified as adaptive in current bereavement theory: an opportunity to share the narrative accounts of the final hours of their relative's life; a search for sense and meaning in loss; an ongoing bond/attachment with the deceased; altruistic motivations; oscillation between loss and restorative orientations; and a sense of resilience. Overall, the participants found that taking part in the research was valuable and that it could be described as offering therapeutic benefits.Significance Of Results: The need for bereaved relatives to take part in research studies should be encouraged, as they provide an accurate proxy for the patient's experience of end-of-life care while also providing a valuable account of their own perspective as family member and carer. In addition, we highlight the need for ethics committees to be aware of the potential benefits for bereaved relatives participating in research of this kind. [ABSTRACT FROM AUTHOR]

Background: We evaluated end of life care services in two English counties including: coordination centres, telephone advice line, ‘Discharge in Reach’ nurses, a specialist community personal care team and community nurse educators. Elsewhere, we published findings detailing high family carer satisfaction and fewer hospital admissions, Accident and Emergency attendances and hospital deaths for service users compared to controls. The aim of this paper is to discuss what contributed to those outcomes. Methods: Using realist evaluation, data collection included documentation (e.g. referral databases), 15 observations of services and interviews with 43 family carers and 105 professionals. Data were analysed using framework analysis, applying realist evaluation concepts. Findings were discussed at successive team meetings and further data was collected until team consensus was reached. Results: Services ‘worked’ primarily for those with cancer with ‘fast track’ funding who were close to death. Factors contributing to success included services staffed with experienced palliative care professionals with dedicated (and sufficient) time for difficult conversations with family carers, patients and/or clinical colleagues about death and the practicalities of caring for the dying. Using their formal and informal knowledge of the local healthcare system, they accessed community resources to support homecare and delivered excellent services. This engendered confidence and reassurance for staff, family carers and patients, possibly contributing to less hospital admissions and A&E attendances and more home deaths. Conclusions: With demand for 24-hour end of life care growing and care provision fragmented across health and social care boundaries, services like these that cut across organisational sectors may become more important. They offer an overview to help navigate those desiring a home death through the system. [ABSTRACT FROM AUTHOR]

Background A 'blended' (e-learning and facilitated workshops) training course for Group C staff (i.e. staff with relatively infrequent contact with end of life care) has been delivered across several English counties with the aim of improving end of life care in nursing and residential care homes. This paper evaluates the impact of the course on participants' understandings of and confidence in delivering end of life care in one nursing home, while also considering barriers to change in practice. Methods A mixed-methods case study approach, incorporating pre- and post-course questionnaires (SHA East of England End of Life Care Education Programme 'ABC' Project Work Force C or Non Nurse Workforce B Pre and Post Course Questionnaire; E-Learning in End of Life Care Study Pre and Post Course Questionnaire), documentary analysis, semi-structured interviews, and observation of course workshops. Participants were 20 members of staff at a nursing home in a city in the East of England, including 14 Health Care Assistants (carers) and 6 others (administrative, activities, hosting, and catering staff). The questionnaires and interviews assessed understandings of and confidence towards end of life care delivery. Results Improvements in participants' confidence in delivering end of life care were observed, particularly in the core competency areas of symptom management, communication, and advance care planning. A shift towards more detailed and more holistic understandings of end of life care was in evidence; some participants also championed end of life care in the home as a result of the course. Several barriers to changes in practice were encountered, including uneven participation, the absence of mechanisms for disseminating new insights and knowledge within the home, and a widespread perception that nurses' professional dominance in the home made sustainable change difficult to enact. Conclusions While blended e-learning courses have the potential to generate positive change in participants' understandings of and confidence about End of Life Care, organizational and inter-professional obstacles must be overcome in order to translate these changes into improved end of life care delivery in nursing (and residential) homes. [ABSTRACT FROM AUTHOR]

Little is known about the quality of the end-of-life care patients receive at home. This paper reports findings from a study that explored bereaved relatives' and carers' experiences of end-of-life care at home using the Care of the Dying Evaluation (CODE) questionnaire. Narrative data from questionnaires completed by 72 carers of patients who had died at home in the North West of England underwent qualitative analysis. In general good quality care was provided, but there were times when adequate support was not evident in relation to pain control and what to expect when death was imminent. The study provides useful information for those who provide end-of-life care at home. [ABSTRACT FROM AUTHOR]

Purpose - The purpose of this paper is to explore the presence and nature of integrated care in community hospitals. Design/methodology/approach - Staff reported their views and experiences of integrated care in 48 questionnaires for a Community Hospitals Association programme. An analytical framework was developed based on eight types of integration, and the community hospital services concerned were grouped into nine service categories. Findings - Staff reported multiple types of integration, averaging four types (median), with a range of two to eight (of the eight types studied). The types of integration most frequently reported were multidisciplinary care, and community hospital/secondary care and community hospital/primary care. Integrationwith communities, patients and the third sector featured in many of the services. Integrationwith social care and local authorities were least frequently reported. Services with the highest number of types of integration (5þ) included palliative care, maternity services and health promotion. Staff reported that commitment was a positive factor whilst a lack of staff resources hindered partnership working. Research limitations/implications - Staff volunteered to be part of the programme which promoted good practice, and although the findings from the study cannot be generalised, they do contribute knowledge on key partnerships in local hospitals. Further research on the types, levels and outcomes of integrated care in a larger sample of community hospitals would build on this study and enable further exploration of partnership working. Practical implications - The analytical framework developed for the study is being applied by staff and community groups as a tool to help assess appropriate partnership working and help identify the scope for further developing integrated care. The evidence of integrated working is available to inform those commissioning and providing community health services. Originality/value - This study has shown that integrated working is present in community hospitals. This research provides new knowledge on the types of integrated care present in a range of community hospital services. The study shows a tradition of joint working, the presence of multiple simultaneous types of integration and demonstrated that integrated care can be provided in a range of services to patients of all ages in local communities. [ABSTRACT FROM AUTHOR]

Background The majority of deaths in the UK occur in acute hospitals, and older people have the highest hospital death rates. Improved palliative care for older people has been identified as an international priority, yet little is known about the profile of older patients with palliative care needs in hospitals. Objective To describe the profile of older hospital inpatients (≥85 years), and to explore the prevalence and nature of palliative care needs among this group. Methods A cross-sectional survey of palliative care need in older people was undertaken in two UK acute hospitals. Hospital case notes were examined for evidence of palliative care need according to Gold Standards Framework (GSF) prognostic indicator criteria. Patients (or consultees) completed assessments of palliative care need. Subjects Data were collected for 654 consenting patients/consultees. This paper describes data from 110 patients aged ≥85 years. Results Forty per cent of the older patients were identified as having palliative care needs according to GSF criteria. Frailty was the most common indicator of palliative care need (16.7%). The most common reason for admission to hospital was general frailty (25.5%). Conclusions While this study is limited by its small sample size, the results suggest that older people with frailty conditions constitute a substantial proportion of hospital inpatients with palliative care needs. However, it is unclear whether a specialist palliative care framework is the most appropriate model for this group. The care provided to older people at the end of life may best be provided by generalists such as geriatricians, as part of a comprehensive generalist-led palliative care framework. [ABSTRACT FROM AUTHOR]

This paper provides an overview of service user involvement of a group of children and young people with palliative care needs from a Children's hospice in the design and development of the BSc (Hons) Children's Nursing programme at Canterbury Christ Church University (CCCU), Kent. It will specifically describe the children and young people's service user involvement in three key areas: programme development and contribution to the curriculum, selection of students and participation in the assessment of the students' clinical experience. The introduction of the new Nursing and Midwifery Council Standards for pre-registration nurse education (2010) has led for the need to involve service users at the planning and development phase of new nurse educational programmes to ensure the delivery of high-quality care. The following key themes were identified as being important to the children and young people: communication, accessing mainstream education and transitioning. These have been incorporated and strengthened within the new children's nursing curriculum, creating a contemporary children's nursing programme in response to the needs of children and young people. [ABSTRACT FROM AUTHOR]

In one UK hospice, inpatient unit records showed that over 8 years 12 needlestick injuries related to continuous subcutaneous infusion of medication occurred. Following a change-over to Teflon cannulae no further incidents were reported. However, when the more sensitive and accurate McKinley T34 syringe drivers were introduced in 2007 a new problem of recurrent occlusion alarm sounding manifested. Investigation revealed that the Teflon cannulae were often kinking, delaying medication delivery and necessitating re-siting of the cannula. The action research approach was used to find an alternative device to improve practice and ensure that both staff and patients were safeguarded. This paper explains how that process was followed until a satisfactory alternative was sourced and evidenced, including an account of the problems that were experienced along the way. [ABSTRACT FROM AUTHOR]

Over recent years there have been several political imperatives in the UK directed toward children's palliative care and ensuring that services are high-quality, coordinated, family-centred, and able to meet the needs of children with complex disabilities. In addition, in 2010 the health and social care regulation authority in England-the Care Quality Commission (CQC)-aligned hospices with regulation and inspection requirements. This context has acted as a driver for the creation of effective education and training to ensure a skilled and expert workforce. Against this backdrop, this paper describes a project to develop a learning and development strategy for Children's Hospices across London (CHaL). CHaL educators worked with a research team to develop a unified strategy that was based on evidence of good practice, embedded in required CQC outcomes, and validated with a wider audience. The resultant strategy contains a set of four key learning and development principles that are applicable and transferable across different hospices. [ABSTRACT FROM AUTHOR]

This paper reports on a focus group study aimed at exploring the difficulties that palliative care healthcare professionals encounter while assessing the spiritual distress of their patients. Three focus groups were conducted in a hospice (n = 15). Participants were all healthcare professionals working in the hospice in-patient unit. Interviews were taped and later transcribed. The data was analysed through content analysis. Emergent themes included: lack of vocabulary around spiritual issues, personal issues surrounding death and dying, training issues, fear of being unable to resolve spiritual problems, time constraints and difficulty separating spiritual and religious needs. Participants provided a number of recommendations for improving care. This pilot study has generated useful data in relation to how spiritual care of patients might be improved. Despite the abundance of academic publications and policies on spirituality, this area is not integrated well into palliative care. [ABSTRACT FROM AUTHOR]

Palliative care exists in a variety of settings and palliative care teams form many guises within this. A Palliative Medicine Outpatient Clinic (PMOC) exists to meet the flexible provision of the needs and preferences of individuals within whatever care setting they reside. This explorative study used a qualitative methodology, capturing patients’ actual experience of care in preference to their satisfaction, as this is a more accurate measure of how and what patients judge as important in their healthcare. The overall themes in this paper point to the ‘value’ that patients perceived from attending the PMOC and how important the clinics were to clinicians that provided the care. The clinic facilitates much more than symptom control and here lies the challenge in how we convert the very positive experience of individuals into a language of outcome measures that captures the ‘essence’ of our work in this fiscally driven health economy. [ABSTRACT FROM AUTHOR]

Potentially avoidable medication-related harm is an inherent risk in palliative care; medication management accounts for approximately 20% of reported serious incidents in England and Wales. Despite their expertise benefiting patient care, the routine contribution of pharmacists in addressing medication management failures is overlooked. Internationally, specialist pharmacist support for palliative care services remains under-resourced. By understanding experienced practices ('what happens in the real world') in palliative care medication management, compared with intended processes ('what happens on paper'), patient safety issues can be identified and addressed. This commentary demonstrates the value of stakeholder engagement and consultation work carried out to inform a scoping review and empirical study. Our overall goal is to improve medication safety in palliative care. Informal conversations were undertaken with carers and various specialist and non-specialist professionals, including pharmacists. Themes were mapped to five steps: decision-making, prescribing, monitoring and supply, use (administration), and stopping and disposal. A visual representation of stakeholders' understanding of intended medicines processes was produced. This work has implications for our own and others' research by highlighting where pharmacy expertise could have a significant additional impact. Evidence is needed to support best practice and implementation, particularly with regard to supporting carers in monitoring and accessing medication, and communication between health professionals across settings. [ABSTRACT FROM AUTHOR]

The research base of palliative care is growing rapidly, but despite methodological advances, some of the practical challenges of working with people at the end of life will persist. This means that analysis of routine data is arguably more important in studying palliative care than it is in other aspects of health services research. End-of-life researchers have been using the high-quality linked data from cancer registries for many years. This paper explores the value of a less well-known resource for palliative care research: linked mortality and hospital activity data. Two case studies are presented using information from Scotland (population 5.1 million) and the former Oxford region of England (population 2.5 million). The advantages and limitations of linked hospital and mortality data for research and service planning in palliative care are drawn out through analyses investigating hospital bed utilisation by people with cancer and heart failure and the influence of social deprivation on the use of hospital services in the last year of life. The use of such data deserves a higher profile. [ABSTRACT FROM AUTHOR]

This paper explores access to palliative care services by people with learning disabilities. It is based on a study of specialist palliative care professionals in London, involving 32 semi-structured interviews and 543 postal questionnaires. We focus on one aspect of the findings, related to the current use of specialist palliative care services by people with learning disabilities. The results indicate that such services are under-used by this group. We discuss possible reasons for low referral rates, including late diagnosis and lack of understanding among both learning disability services and palliative care services about each other's roles. We highlight the importance of collaboration, and the need for further staff training. [ABSTRACT FROM AUTHOR]

This paper describes the questionnaire component of a two-stage study to examine the research priorities of palliative care patients. In the first stage focus groups were conducted to determine a list of priorities for future research: a questionnaire created from these themes was then used in five hospices across East Anglia. Patients thought that the focus group priorities were important and scored research into emergency care, pain control and helping doctors to understand what patients were saying as most important. Differences in priority were associated with gender, age and in-patient versus day therapy patients. [ABSTRACT FROM AUTHOR]

To elucidate the research priorities of palliative care patients we conducted focus groups with day therapy and hospice in-patients with cancer with an estimated prognosis of 6 months or less. Patients were positive about taking part in this research project identifying five main priorities for future research - talking with patients; help for patients and families; oncology; symptoms; medication/treatments. Patients gave great emphasis to communication issues and little to symptom control. A patient questionnaire was created with these themes which is currently being used in five hospices across East Anglia. This paper describes the qualitative component of the study. [ABSTRACT FROM AUTHOR]

Palliative care researchers face many ethical and practical challenges. In particular, recruitment has proven difficult. New methodologies and methods need to be developed if barriers are to be overcome. This paper presents an example of a participatory approach to research with people receiving palliative care services. The approach was used for recruitment into an in-depth multi-methods study of weight loss and eating difficulties experienced by people with advanced cancer. Methods included a survey of patients on the case-loads of two community palliative care teams working in the South of England in 2003. The questionnaire was returned by 199 patients, 58% of the total patient population under the care of the two teams. Benefits of the approach taken are detailed, but also issues that emerged across the course of recruitment, thus highlighting points of interest for palliative care researchers. It is proposed that the success of the recruitment process can be attributed to the adoption of a context specific participatory approach. Successful recruitment into the study challenges the widely held belief that, for practical and ethical reasons, it is inappropriate to study people who are approaching the end of life. It demonstrates that a participatory approach enables clinical practice and research to share decision making and values, leading to a feasible and successful recruitment process that is acceptable to clinicians, researchers and patients. [ABSTRACT FROM AUTHOR]

Palliative care is an established and expanding speciality, important in many areas of service delivery within health and social services and the voluntary sector. Traditionally, palliative care is viewed as most closely linked to cancer services. National government policy has an inevitable impact on the organization and provision of such services. As part of a wider project, an investigation of the content and development of English government policy relating to palliative care was carried out. The development of policy follows a cycle that has no closure; it takes place within changing contexts, between multiple organizations and across sectors. Data collection involved the collation and close examination of policy documents and other documents that demonstrably influenced policy. This was in order to identify a national view of policy intentions for palliative care. In total, 53 policy documents were examined. The analysis revealed a number of pertinent issues relating to shifts in funding policies and an evolving definition of palliative care. There is an increasing recognition in the policy documents of the need for palliative care to extend beyond the traditional focus on cancer services and terminal illness. In tandem, is an increasing recognition of the need for partnership between sectors, reflected in more recent health and social services legislation. [ABSTRACT FROM AUTHOR]

This paper describes a study that sought to identify service providers' and commissioners' understanding of specialist palliative care within the context of changing service provision in one area of South London. Using a formative evaluation framework, we examined the views of 44 providers and commissioners from statutory and voluntary health and social care services about their understanding of specialist palliative care services and, in particular, the remit of current service provision delivered by a Marie Curie Centre. Face-to-face audiotaped semi-structured interviews were conducted. A qualitative thematic analysis highlighted a number of issues including a lack of consensus about definitions of palliative care, ambivalence about referral procedures, and a lack of role clarity between specialist and generalist palliative care providers. The study took place within the real world context of changing services and economic pressures. This raises methodological issues about how services are evaluated and what terminology is used to describe end-of-life care. The study findings confirm that confusion about terminology and referral criteria remain major issues for clinical workers and organizations seeking to access services. [ABSTRACT FROM AUTHOR]

Since 1987 health authorities in England have been required to make plans for palliative care provision, but their record in doing so has been patchy. The production of health improvement plans (HImPs), in which each health authority must set out its priorities and actions designed to improve the health and well-being of its local population, provides an opportunity to examine the extent to which palliative care provision in the NHS is regarded as a priority by policy makers in England. This paper reports on a structured documentary review of the HImPs published by the 99 health authorities in England. The review indicates that at the moment, in spite of the longstanding duty placed on health authorities to develop strategic plans for palliative care and to assess the level of local palliative care needs, not all have made significant progress in this direction. Among those that do have plans for palliative care, the vast majority of these plans are for people with cancer. What emerges most clearly is a sense in which specialist palliative care, especially for non-cancer patients, is perceived as an 'optional extra' by many health authorities rather than an integral and essential part of the overall supportive care strategy which they clearly are at pains to develop. [ABSTRACT FROM AUTHOR]

This paper reports on data from the Regional Study of Care for the Dying, conducted in 1990, and compares symptoms, care and service utilization for patients with chronic lung diseases (CLD) and lung cancer (LC) in the final 12 months of life. Post-bereavement structured interviews were conducted with informal carers of 449 LC patients and 87 CLD patients. The LC patients were significantly younger than those with CLD (P = 0.001) and these respondents were more likely to have been a spouse (P = 0.034). No differences were found in the mean number of symptoms reported by the two groups in the final year or week of life, although the CLD patients were more likely to have experienced these symptoms for longer. Significantly more patients with CLD than LC experienced breathlessness in the final year (94% CLD vs 78% LC, P < 0.001) and final week (91% CLD vs 69% LC, P < 0.001) of life. Significantly more LC patients were reported to have experienced anorexia (76% LC vs 67% CLD, P = 0.06) and constipation (59% LC vs 44% CLD, P = 0.01) in the final year of life. There were no differences in general practitioner use, but LC patients were reported to have received more help from district nurses (52% LC vs 39% CLD, P = 0.025) and from a palliative care nurse (29% LC vs 0% CLD, P < 0.001). More CLD patients were reported to have received help from social services (29% CLD vs 18% LC, P = 0.037). LC patients were reported to be more likely to have known they might die (76% LC vs 62% CLD, P = 0.003) and to have been told this by a hospital doctor (30% LC vs 8% CLD, P = 0.001). Among those that knew, LC patients were told earlier prior to death than CLD patients. This study suggests that patients with CLD at the end of life have physical and psychosocial needs at least as severe as patients with lung cancer. [ABSTRACT FROM AUTHOR]

While much research has described experiences at the end of life, no studies have explored the black Caribbean perspective. This paper compares the final year of life of first generation black Caribbeans and white patients with advanced disease in an inner London health authority, focusing on their satisfaction with service provision in both primary care and acute settings using face-to face interviews with carers of deceased patients. Of the 106 black Caribbean patients and 110 white deceased patients identified as dying during the study period 50 interviews per ethnic group were conducted with family members or close friends, a response rate of 47% and 45%. Even though examples of excellent and good care were cited, a larger proportion of negative satisfaction ratings of health care was recorded among respondents representing black Caribbean patients. This was true for all health care settings, particularly primary care, but less so for specialist palliative care nurses. However, few black Caribbean patients accessed specialist palliative care nurses or hospices. Qualitative data provided a deeper insight into the black Caribbean experience care at the end of life. We recommend that where examples of best practice in palliative care and culturally sensitive provision are evident they be extended to more health care professionals through education and training. Access to specialist palliative care services needs to be improved. [ABSTRACT FROM AUTHOR]

Background: Digital legacy refers to the online content available about someone following their death. This may include social media profiles, photos, blogs or gaming profiles. Some patients may find it comforting that their digital content remains online, and those bereaved may view it as a way to continue bonds with the deceased person. Despite its growing relevance, there is limited evidence worldwide around the experiences of palliative care professionals in supporting patients to manage their digital legacy. Aim: To identify palliative care healthcare professionals' experiences of supporting patients receiving palliative care in managing digital legacy as part of advance care planning discussions. Design: A constructivist grounded theory approach was used to understand healthcare professionals' experiences of managing digital legacy. Semi-structured interviews were carried out. Setting and participants: Participants were 10 palliative care healthcare professionals from across the multidisciplinary team working in a hospice in the North-West of England. Results: Four theoretical categories were found to revolve around an emergent theory 'understanding the impact of digital legacy' which describe the experiences of palliative care healthcare professionals managing digital legacy as part of advance care planning. These were ' accessing digital legacy '; ' becoming part of advance care planning '; ' impacting grief and bereavement '; and ' raising awareness of digital legacy '. Conclusions: The emerging theory ' understanding the impact of digital legacy ' offers insight into the knowledge and experiences of healthcare professionals working in a palliative care setting. Digital assets were viewed as being equally as important as physical assets and should be considered as part of advance care planning conversations. [ABSTRACT FROM AUTHOR]

This paper reports an evaluation of a 3-year pilot community care project to extend ‘hospice standards’ of palliative care to nursing home residents in Nottingham. The evaluation involved two questionnaire surveys of all matrons of nursing homes with registered palliative care beds (39 and 43 matrons, respectively) and 35 interviews with a sample of local stakeholders selected to give a range of views regarding the project’s impact. The interview sample included nursing home matrons (10) and care staff (7); nursing home residents and their relatives (4); community nurses (3); members of the Health Authority and Social Services (6); and local palliative care experts (5). Other sources of data included referral forms, evaluation of training sessions and a reflective account given by the project coordinator. The analysis used descriptive statistics to summarize the quantitative data and an iterative procedure to generate themes from the qualitative data. The overall perception of the project’s impact was that it had helped to overcome the barriers that exist between NHS services and the independent sector. By providing assistance with individual care and access to specialist advice, equipment and training, the project was thought to have decreased the isolation experienced by staff and residents and improved equity of access to specialist palliative care for nursing home residents. Although it was widely agreed that the nursing home is an appropriate setting for palliative care, concern was expressed about the quality of care that can be given with mostly unqualified care staff. Ongoing needs for training and liaison between nursing homes and specialist palliative care services were identified. [ABSTRACT FROM AUTHOR]

The aim of this paper is to describe the palliative care experience of Bangladeshi patients and carers in the Tower Hamlets area in the east of London. Semi-structured interviews were carried out in Sylheti, the Bengali dialect of this community, with bereaved primary carers of 18 patients (10 male, eight female) referred to an east London community palliative care team between 1986 and 1993. It was found that patients were young, with a mean age of males of 55 years (range 34–65) and females of 40 years (range 28–57). Communication difficulties were common. The fluency in English of patients was low, with reliance on family members, especially children, for translation. The diagnosis was known by all patients, but only 56% of carers agreed with disclosure. Team dissatisfaction with communication was recorded in 16 cases. Fourteen patients died in London; however, 13 were buried in Bangladesh. Carers often reported symptoms as poorly controlled. Pain was said to be severe for 14 patients, and pain control said to be poor in 11. Family and friends provided most support during the illness and bereavement. Serious financial difficulties occurred in nine families. General practitioners were involved actively in six cases. In conclusion, there are ethno-specific needs in this particular community, many of which arise from socio-economic factors, recent migration and religious beliefs, and which are highlighted by terminal illness. [ABSTRACT FROM AUTHOR]

This paper examines the relationship between the satisfaction of informal carers with the care delivered to dying people in the last year of life and patient and carer characteristics. A secondary analysis was conducted on a subsample from the Regional Study of Care for the Dying (RSCD) in which bereaved relatives or friends of a random sample of deaths in 1990 in 20 health districts across England were interviewed some 10 months after the death. There were 1,858 informal carers who were close relatives or friends/neighbours of people who died from cancer in this analysis. Results show that highly satisfied carers were those who perceived caring as rewarding (OR=2.31, 95% Cl: 1.04–5.11), those who reported having had no unmet needs while caring for the deceased at home (OR=2.50, 95% Cl: 1.87–3.34), and those who rated their post-bereavement health as excellent (0R=2.61, 95% Cl: 1.70–3.90). Reporting for the deceased who were owner-occupiers was also associated with a high odds ratio for satisfaction (0R=2.52, 95% Cl: 1.37–4.61). Factors such as the patient's duration of functional limitation, the duration of confusion and psychological symptoms, and the carer's strength of religious faith were also found to predict satisfaction but to a lesser extent. Health planners and managers should be aware that informal carers' overall satisfaction with health and social services is predicted by carer and patient attributes. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To understand why diagnosing dementia is important in care homes • To reflect on how a diagnosis of dementia enables nurses to deliver person-centred care • To learn how dementia diagnosis rates in care homes might be improved It has been estimated that 70% of care home residents have dementia on admission or develop it after admission, but that many do not have or receive a formal diagnosis of dementia. People with dementia often have significant care needs and it is important that the condition is diagnosed even at an advanced stage. This will enable nurses to predict the person's care needs, develop appropriate care plans and arrange pre-emptive decisions. In 2021-22, a quality improvement project took place in care homes in West Norfolk. This project piloted an abbreviated memory assessment model based on the Diagnosing Advanced Dementia Mandate (DiADeM) tool to increase the rate of diagnoses among residents showing signs and symptoms of cognitive impairment but not formally diagnosed with dementia. Out of 109 residents assessed, 95 were diagnosed with dementia. The pilot is being extended locally and replicated across England. [ABSTRACT FROM AUTHOR]

Background: Understanding how socioeconomic position influences the symptoms and concerns of patients approaching the end of life is important for planning more equitable care. Data on this relationship is lacking, particularly for patients with non-cancer conditions. Aim: To analyse the association between socioeconomic position and the symptoms and concerns of older adult patients seen by specialist palliative care. Design: Secondary analysis of cross-sectional, routinely collected electronic patient data. We used multivariable linear regression with robust standard errors, to predict scores on the three subscales of the Integrated Palliative care Outcome Scale (IPOS; physical symptoms, emotional symptoms and communication and practical concerns) based on patient level of deprivation, measured using Index of Multiple Deprivation. Setting/participants: Consecutive inpatients aged 60 years and over, seen by specialist palliative care at two large teaching hospitals in London between 1st January 2016 and 31st December 2019. Results: Seven thousand eight hundred and sixty patients were included, 38.3% had cancer. After adjusting for demographic and clinical characteristics, patients living in the most deprived areas had higher (worse) predicted mean scores on the communication and practical subscale than patients living in the least deprived areas, 5.38 (95% CI: 5.10, 5.65) compared to 4.82 (4.62, 5.02) respectively. This effect of deprivation diminished with increasing age. Deprivation was not associated with scores on the physical or emotional symptoms subscales. Conclusions: Targetting resources to address practical and communication concerns could be a strategy to reduce inequalities. Further research in different hospitals and across different settings using patient centred outcome measures is needed to examine inequalities. [ABSTRACT FROM AUTHOR]

Background: Worldwide, around 21 million children would benefit from palliative care and over 7 million babies and children die each year. Whilst provision of paediatric palliative care is advancing, there major gaps between what should be done, and what is being done, in clinical practice. In 2017, the National Institute for Health and Care Excellence (NICE) introduced a quality standard, to standardise and improve children’s palliative care in England. However, there is little evidence about what good experiences of palliative care for children are, and how they relate to the quality standard for end-of-life care. Aim: This study explored how the NICE quality standard featured in parental experiences of palliative care for children to understand what ‘good’ palliative care is. Design: Qualitative study, employing in-depth, telephone and video-call, semi-structured interviews. Data were analysed using thematic analysis, informed by Appreciative Inquiry. Setting/participants: Participants were parents of children and young people (aged 0–17 years) in England, who were receiving palliative care, and parents whose child had died. Results: Fourteen mothers and three fathers were interviewed. Seven were bereaved. Parents were recruited via four children’s hospices, one hospital, and via social media. Good palliative care is co-led and co-planned with trusted professionals; is integrated, responsive and flexible; encompasses the whole family; and enables parents to not only care for, but also to parent their child to end of life. Conclusions: Findings have implications for informing evidence based practice and clinical guidelines, overall improving experiences of care. [ABSTRACT FROM AUTHOR]

This section offers learning disability news briefs including the British Institute of Learning Disabilities' call for papers for the 2017 International Positive Behavior Support (PBS) conference, the launching of the Learning Disabilities Core Skills Education and Training by Skills for Health, and the National Pallative Care for People with Learning Disabilities Conference on November 4, 2016.

Background: Multiple long-term health conditions (MLTCs) are common and increasing among older people, yet there is limited understanding of their prevalence and association with social care expenditure. Aim: To estimate the prevalence of MTLCs and association with English social care expenditure. Methods: Our study population included those aged = 65 who died in England in the year 2018with any of the following long-term conditions recorded on their death certificate: diabetes; cardiovascular diseases (CVDs) including hypertension; dementia; stroke; respiratory; and chronic kidney diseases (CKDs). Prevalence was based on the proportion of death reported for older people with MTLCs (= 2) in each of the 152 English Local Authorities (LAs). Ordinary least square regression (OLS) was used to assess the relationship between prevalence of MTLCs and adult social care expenditure, adjusting for LA characteristics. Results: Of the 409551 deaths reported, 19.9% (n = 81395) had = 2 MTLCs, of which the combination of CVDs-diabetes was the most prevalent. Hospitals were the leading place of death for those with MTLCs. Results from the OLS regression model showed that an increased prevalence of MLTCs is associated with higher LA social care expenditure. A percentage point increase in prevalence of MLTCs is associated with an increase of about £8.13 in per capita LA social care expenditure. Conclusion: Our findings suggest that the increased prevalence of MTLCs is associated with increased LA social care expenditure. It is important for future studies to further explore the mechanisms or link between LA social care expenditure and the prevalence of MTLCs. [ABSTRACT FROM AUTHOR]