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Background: Liver disease is a growing health concern and a major cause of death. It causes multiple symptoms, including financial, psychological and social issues. To address these challenges, palliative care can support people alongside active treatment, and towards the end of life, but little is known about the care experiences of individuals with liver disease in the United Kingdom. This review aimed to explore the palliative and end‐of‐life care experiences of people with liver disease in the United Kingdom. Method: A systematic review was conducted using a five‐stage process and following Preferred Reporting Items for Systematic Reviews and Meta Analyses guidelines. Searches were across Web of Science, Scopus, EBSCO and grey literature until 10 May 2023. The review was registered through International Prospective Register of Systematic Reviews (PROSPERO). NVivo 12.5 was used to facilitate data analysis (systematic review registration: PROSPERO CRD42022382649). Results: Of 6035 papers (excluding duplicates) found from searches, five met the inclusion criteria of primary research related to adults with liver disease receiving palliative and/or end‐of‐life care in the United Kingdom, published in English. Reflexive thematic analysis of the data was conducted. The themes identified were the experiences of people with liver disease of relating to healthcare professionals, using services, receiving support, and experiences of information and communication. These were connected by an overarching concept of disempowerment versus empowerment, with the notion of person‐centred care as an important feature. Conclusion: This review has found variations in the care experiences of people with advanced liver disease towards the end of life and an overall lack of access to specialist palliative care services. Where services are designed to be person‐centred, experiences are more empowering. Further research is needed but with recognition that it is often unclear when care for people with liver disease is palliative or end‐of‐life. Patient and Public Contribution: An online public involvement workshop was held on 18 April 2023 through Voice (2023). This included four people with liver disease and four carers to discuss the review findings and to design a qualitative research study to further explore the topic. [ABSTRACT FROM AUTHOR]

Background Given the globally ageing population, care homes have an important role in delivering palliative and end-of-life care. Advance care planning (ACP) is promoted to improve the quality of end-of-life care in this setting. While many professionals can be involved in ACP, little is known about what influences multi-professional involvement and how multi-professional working impacts the ACP process in the UK. This study investigated multi-professional practice in relation to ACP in nursing homes. Design and methods An ethnography was undertaken in two UK nursing homes using multiple methods of data collection: observations, interviews and document review. Participants included the following: nursing home residents (n  = 6), relatives (n  = 4), nursing home staff (n  = 19), and visiting health and social care professionals (n  = 7). Analysis integrated thematic analysis, mapping of resident ACP trajectories and documentary analysis. Findings This paper suggests that multi-professional and relatives' involvement in ACP was disjointed. Continuity and coordination were disrupted by misalignment of visiting professional and nursing home organisational structures. Findings show a 'knotworking' approach to teamwork and power imbalance between nursing home staff and visiting professionals, such as general practitioners. While residents wished their relatives to be involved in their ACP, this was not formally recognised, and limited support existed to facilitate their involvement. Conclusion The structure and organisation of multi-professional and relatives' involvement in ACP led to fragmentation of the process. This marginalised the voice of both the resident and nursing home staff, thereby limiting ACP as a tool to enhance quality of end-of-life care. [ABSTRACT FROM AUTHOR]

Background: Access to affordable, appropriate housing is one of the key social determinants of health, affecting well-being across the lifecourse. However, beyond a recognition that housing quality is linked to place of death, little is known about the ways in which housing status impacts social, emotional, and practical aspects of dying and bereavement. Method: The Checking Out project is a qualitative study aiming to explore the ways in which socio-economic status impacts people's experiences of, and attitudes towards, death, dying, and bereavement in the United Kingdom. Qualitative interviews were carried out with 14 bereaved individuals with experience of poverty at end of life or in bereavement, and 15 professionals supporting individuals in low-income communities. Interviews were conducted via phone/video call, and data include experiences of end of life and bereavement both before and during the pandemic. Transcripts were examined using thematic analysis. Results: Housing emerged as an important factor affecting people's experiences, with 7 of the 14 bereaved individuals and all except 1 of the professionals discussing housing-related issues. Participants described ways in which unsuitable housing and housing insecurity impacted practical aspects of dying but also emotional and social well-being at end of life. Housing-related issues affected both patients and their families, though families found it difficult to air these concerns when their relative was dying. Conclusion: The paper demonstrates how trusted professionals are able to advocate or address the issues faced by bereaved individuals and suggests implications for policy and practice. A greater awareness of the potential impact of housing status across public services, including healthcare practitioners, welfare support, and housing providers, could better support patients and practitioners to address these issues proactively. Housing providers and policy-makers should be included as key partners in collaborative public health approaches to palliative care. [ABSTRACT FROM AUTHOR]

Background: The involvement of speech and language therapists (SLTs) within paediatric palliative care (PPC) settings has been recognized within the extant literature. However, there is little understanding of SLT's specific roles and practices when working with this vulnerable cohort of children and their families. As part of a larger body of work to develop consensus‐based recommendations for SLTs working in PPC, it is important to investigate demographic and caseload characteristics. Aims: This exploratory study aimed to gather previously undocumented international demographic data pertaining to SLT service provision, caseload and training in PPC. Additionally, it sought to ascertain the current treatment and assessment approaches of SLTs, and if variations exist in beliefs and practices. Methods & Procedures: An anonymous cross‐sectional survey was designed and reported according to the Checklist for Reporting Results of Internet E‐Surveys (CHERRIES). The online survey consisted of 40 items spanning four domains: (1) demographic information, (2) caseload information, (3) service provision and (4) training and education. SLTs from Australia, Canada, New Zealand, the UK, Ireland and the United States were recruited using a purposive snowball sampling approach. Descriptive analysis of closed‐ended survey responses and content analysis of open‐ended responses are presented. Outcomes & Results: A total of 52 respondents completed the survey. SLTs worked in a variety of PPC settings, with patients of varying age and disease groups. Over 50% of participants reported working in PPC for ≤ 4 years. Genetic disorders (34%), oncology (27%) and neurological conditions (21%) made up a significant portion of respondents' caseloads. Reported treatments and assessment approaches used by SLTs are not unique to a PPC population. Barriers and enablers for practice were identified. A portion of participants did not feel trained and prepared to assess (19.2%) or treat (15.4%) PPC clients. Conclusions & Implications: This study confirms that SLTs internationally have a role in the management of communication and swallowing impairments in a PPC context. However, whether current training and resources adequately support SLTs in this role remains questionable. This paper helps to provide SLTs, administrators, professional associations and tertiary institutions with foundational data to help inform workforce planning, advocacy efforts and training priorities. What this paper addsWhat is already known on the subjectThe published multidisciplinary literature has identified that SLTs have a role in PPC. However, there has been no targeted research investigating the professional characteristics of clinicians in this context, nor any detailed information regarding associated clinician beliefs or management approaches.What this paper adds to existing knowledgeThis study is a snapshot of attributes, practice patterns and beliefs of SLTs who work with a PPC population. It highlights SLT perspectives of education and training, as well as meta‐perceptions of themselves within the multidisciplinary team.What are the potential or actual clinical implications of this work?Data presented in this paper will help to enable SLTs, organizations and associations to augment service provision and determine future professional development priorities within the field of PPC. [ABSTRACT FROM AUTHOR]

Introduction Research in palliative care (PC) is often regarded as challenging due to the vulnerability of the population and other peculiarities. We aim to systematically identify barriers to research in PC in the literature. Methods The electronic databases CINAHL, MEDLINE were searched for papers published in the last 25 years. Citations and then abstracts were screened for inclusion. Original papers were included on first-level analysis. On a second level reviews, reports, and position papers were analyzed. Papers containing a direct patient report were specifically analyzed. Barriers were categorized (ethical considerations, financial and time expenses, study design and methodology, human resources and politics) and results quantified. Results Twenty-one original papers and 65 other papers were included. Five studies involved patients directly, five were systematic reviews, three were study experiences, and seven were surveys or workshop reports. Most papers originated from UK, USA, or Norwegian Universities. Ethics and methods were the most often mentioned categories on both levels. Accrual, attrition, and gatekeeping were frequently named barriers. Complex invasive studies or possible side effects hinder patients' participation, as patients are often willing to participate for altruistic motivations. Discussion Barriers to PC research are ethical concerns and methodological challenges. Possible strategies to overcome methodological barriers include international collaborative efforts to include more patients and improve study designs. Ethical barriers indicate the need for patient involvement in the research development process and tailoring research specifically to the PC population. [ABSTRACT FROM AUTHOR]

AimTo synthesize information about management of end of life care in people with dementia using review papers.BackgroundThere are increasing numbers of people being diagnosed with dementia worldwide, and the needs of people with dementia and their carers at the end of life may be different from those with other chronic diseases. By highlighting the challenges of palliative care in persons with dementia and the ways they are best managed, practitioners in primary care may be able to improve services for this group of people at the end of life.MethodsA search of electronic databases of English language papers published in peer-reviewed journals, 2000–2011 inclusive was undertaken using broad terms related to palliative care and dementia. 6167 papers were identified. Titles and abstracts were read. Papers were included if they were literature reviews of palliative or end of life care for people with dementia/Parkinson's disease/Lewy body dementia/cognitive impairment/Alzheimer's disease or any other cognitive impairment, in any setting (hospital, care home, community) and covering people of all ages. Papers were excluded if they covered palliative care focusing on other conditions, or were about an aspect of dementia care and treatment not related to palliative care.FindingsOur critical synthesis generated five main themes from this review of the reviews: (1) carers’ (family caregivers’) experiences; (2) person-centred care; (3) practice (including advance care planning, pain and comfort, nutrition, medical complications and minimizing the distress of behavioural symptoms); (4) system factors, including ethical dilemmas, decision making, information, and training; and (5) research priorities. There appears to be good evidence on the care and management of patients with dementia at the end of life which can be used to influence policy development and emerging specificity about research priorities in palliative care practice for people with dementia. [ABSTRACT FROM PUBLISHER]

Background: The requirement to meet the palliative needs of acute hospital populations has grown in recent years. With increasing numbers of frail older people needing hospital care as a result of both malignant and nonmalignant conditions, emphasis is being placed upon understanding the physical, psychological and social burdens experienced by patients. This study explores the extent of burden in two large UK hospitals, focusing upon those patients who meet palliative care criteria. Furthermore, the paper explores the use of palliative services and identifies the most significant clinical diagnostic and demographic factors which determine physical and psychological burden. Methods: Two hospital surveys were undertaken to identify burden using the Sheffield Profile for Assessment and Referral to Care (SPARC). The Gold Standards Framework (GSF) is used to identify those patients meeting palliative care criteria. Participants were identified as being in-patients during a two-week data collection phase for each site. Data was gathered using face-to-face interviews or self-completion by patients or a proxy. Descriptive analyses highlight prevalence and use of palliative care provision. Binary logistic regression assesses clinical diagnostic predictor variables of physical and psychological burden. Results: The sample consisted of 514 patients and elevated physical, psychological and social burden is identified amongst those meeting palliative care criteria (n = 185). Tiredness (34.6%), pain (31.1%), weakness (28.8%) and psychological discomfort (low mood 19.9%; anxiety 16.1%) are noted as being prevalent. A small number of these participants accessed Specialist Palliative Care (8.2%). Dementia was identified as a predictor of physical (OR 3.94; p < .05) and psychological burden (OR 2.88; p < .05), being female was a predictor of psychological burden (OR 2.00; p < .05). Conclusion: The paper highlights elevated levels of burden experienced by patients with palliative care requirements. Moreover, the paper also indicates that a large proportion of such patients are not in receipt of palliative approaches to their care. Furthermore, the paper identifies that those with non-malignant illnesses, especially dementia, may experience high levels of physical and psychological burden. [ABSTRACT FROM AUTHOR]

In the UK there has been a widespread introduction of 'anticipatory prescribing' in community based palliative care. This involves general practitioners (GPs) writing prescriptions in anticipation of them being needed and has been encouraged to try to minimise the risk of patients suffering uncontrolled symptoms and distress; a key reason why terminally ill patients are admitted to hospital in contradiction of most people's preferences. This paper presents the findings from an ethnographic study of healthcare professionals across four care homes and four community sites in two regions (East Midlands and Lancashire/South Cumbria) of the UK. Data were collected from a range of community health professionals, resulting in 83 episodes of observation and 72 interviews. Findings highlight how essential good interdisciplinary communication is to the process of anticipatory prescribing and end-of-life care. This study found that when interdisciplinary communication worked well the anticipatory prescribing process could be carried out smoothly, optimising patient care. [ABSTRACT FROM AUTHOR]

Background: Research suggests that there may be bereavement experiences and support needs which are specific to family caregivers providing end of life care (EoLC), although this remains an under-researched area. This paper focuses on themes relating to bereavement which were derived from an analysis of free text survey responses collected in a research priority setting exercise for palliative and EoLC. Methods: The priority setting exercise involved a public survey, designed to generate research priorities. Rather than identify research topics, many people instead described their experiences and raised more general questions relating to palliative and end of life care. To explore these experiences and perspectives a supplementary thematic analysis was conducted on the survey responses. 1403 respondents took part, including patients, current and bereaved carers, health and social care professionals, volunteers and members of the public. Results: Several grief issues were identified, which seem specific to the experiences of family caregivers. Responses demonstrated a relationship between death experiences, feelings of guilt and bereavement outcomes for some family caregivers, as well as caregiver experiences of a "void" created by the withdrawal of professional support after death. Communication and support needs were also identified by participants. Conclusion: This analysis provides further evidence of some of the specific effects that caring for a loved one at the end of life can have on bereavement experiences. Finding ways of improving communication around the time of death and effective follow up approaches post death could help to address some of these issues. [ABSTRACT FROM AUTHOR]

To examine the role of trained health and personal care assistants in supporting district nurses and family carers in providing palliative and end of life care in the community. In the UK, there is a policy directive to improve end of life care and to enable greater numbers of people to die at home. This places considerable demands on community nursing services and family carers. In response to this, the Complex and Palliative Continuing Care Service employing generic health and personal care assistants was developed as part of the Marie Curie Delivering Choice Programme in one city in the UK. This paper draws on findings from an independent evaluation of the scheme. The wider evaluation used a formative evaluation methodology. This paper draws on in-depth interviews with a range of stakeholders ( n = 17), in-depth interviews with bereaved carers ( n = 6) and an analysis of documentation. Stakeholders and bereaved carers perceived that the health and personal care assistants made a vital contribution to community palliative care. Careful recruitment, specific training, case management by district nursing with allocation of specific tasks and close ongoing communication were key features which stakeholders indentified. Family carers welcomed the way assistants developed relationships and became familiar and able to meet the care needs of patients. There were some problems reported which related to capacity, work flow and the need for extensive written care plans. Employing health care assistants under the supervision of district nurses appears to support patients and family at home during end of life care and contribute to good quality nursing care. The needs for community-based palliative and end of life care will increase rapidly over the course of the next 20 years, placing pressure on community nursing services and family carers. [ABSTRACT FROM AUTHOR]

Background: There is clear evidence that the full range of services required to support people dying at home are far from being implemented, either in England or elsewhere. No studies to date have attempted to identify the proportion of hospital admissions that could have been avoided amongst patients with palliative care needs, given existing and current local services. This study aimed to examine the extent of potentially avoidable admissions amongst hospital patients with palliative care needs. Methods: A cross sectional survey of palliative care needs was undertaken in two acute hospitals in England. Appropriateness of admission was assessed by two Palliative Medicine Consultants using the following data collected from case notes: reasons for admission; diagnosis and co-morbidities; age and living arrangements; time and route of admission; medical and nursing plan on admission; specialist palliative care involvement; and evidence of cognitive impairment. Results: A total of 1359 inpatients were present in the two hospitals at the time of the census. Of the 654 consenting patients/consultees, complete case note data were collected for 580 patients; the analysis in this paper relates to these 580 patients. Amongst 208 patients meeting diagnostic and prognostic criteria for palliative care need in two acute settings in England, only 6.7% were identified as 'potentially avoidable' hospitalisations. These patients had a median age of 84. Half of the patients lived in residential or nursing homes and it was concluded that most could have received care in this setting in place of hospital. Conclusion: Our findings challenge assumptions that, within the existing configuration of palliative and end of life health and social care services, patients with palliative care needs experience a high level of potentially avoidable hospitalisations. [ABSTRACT FROM AUTHOR]

Background: The United Kingdom has led the world in the development of children's palliative care. Over the past two decades, the illness trajectories of children with life-limiting conditions have extended with new treatments and better home-based care. Future planning is a critically under-researched aspect of children's palliative care globally. This paper describes the development, implementation and evaluation of innovative child and parent-held palliative care planning resources. The resources were designed to facilitate parent and child thinking and engagement in future planning, and to determine care preferences and preferred locations of care for children with life-limiting conditions from diagnosis onwards. These resources fill a significant gap in palliative care planning before the end-of-life phase. Methods: Drawing on contemporaneous research on producing evidence-based children's health information, we collaborated with leading children's not-for-profit organisations, parents, children, and professionals. A set of resources (My Choices booklets) were developed for parents and children and evaluated using interviews (parents, children, professionals) and questionnaires (professionals) and an open web-based consultation. Results: Parents and children responded in three ways: Some used the booklets to produce detailed written plans with clear outcomes and ideas about how best to achieve desired outcomes. Others preferred to use the booklet to help them think about potential options. Remaining parents found it difficult to think about the future and felt there was no point because they perceived there to be no suitable local services. Professionals varied in confidence in their ability to engage with families to plan ahead and identified many challenges that prevented them from doing so. Few families shared their plans with professionals. Parents and children have far stronger preferences for home-care than professionals. Conclusion: The My Choices booklets were revised in light of findings, have been endorsed by Together for Short Lives, and are free to download in English and Welsh for use by parents and young people globally. More work needs to be done to support families who are not yet receptive to planning ahead. Professionals would benefit from more training in person-centred approaches to future planning and additional communications skills to increase confidence and ability to engage with families to deliver sensitive palliative care planning. [ABSTRACT FROM AUTHOR]

Background: The UK Department of Health's End of Life Care Strategy highlighted the low percentage of patients who achieve their wish to die at home (~20%). Figures in south west London were below the London regional average. This paper reports an attempt to improve the proportion of patients from one hospital in the area achieving their preferred place of death. Methodology: A funded initiative by two local primary care trusts allowed the development of a 7-day-per-week fast-track discharge service provided by the hospital palliative care team. The hospital team acted as coordinators, ensured that the correct medication and equipment would be available at the home, and personally transferred the patients to community services. Results: Data is presented from the first representative period of fast-track discharging (June 2009-July 2010). A total of 110 discharges were facilitated over this time, with the rate increasing as the service developed. The vast majority of discharges occurred within 72 hours, and a significant number (~20%) occurred within 24 hours. Conclusions: The data indicate that the new service is effective. There are logistical problems in providing such a service and these are discussed. Further work is required to determine the feasibility of extending this service model to other acute hospitals and to evaluate its health-economic impact. [ABSTRACT FROM AUTHOR]

This review paper explores the use of telehealth in relation to palliative care in the UK. Information technology (IT) developments are being harnessed throughout society, and there is growing interest in the ways in which they can be used to meet and support patients' health needs in the community. The aim of the literature review was to scope the information available from published and unpublished research, with particular reference to older people. The evidence suggests that, despite the challenges, there are numerous examples of good practice in relation to telehealth, palliative and end-of-life care, and older people. Developments in technology that have increased the capacity to improve care, through reaching greater numbers of people of all age groups, mean that telehealth has much to offer people living with and dying from advanced illness. However, some of the evaluative evidence is limited and further rigour is needed when evaluating future telehealth innovations. [ABSTRACT FROM AUTHOR]

Background: In 2011 the Palliative Care Funding Review highlighted concerns about the funding, provision, and quality of care at the end of life. Two years on, an independent review of the Liverpool Care Pathway-prompted by a storm of negative media coverage- has raised concerns around a lack of funding, availability of support for the dying and their relatives, and patient centered care. There are recommendations to increase funding through a national tariff for palliative care services, address inconsistencies, and replace the Liverpool Care Pathway with individual end-of-life care plans. Objective: This paper explores the economic implications of the review's recommendations and links these to inadequacies with the current economic framework currently recommended for use in the United Kingdom by the National Institute for Health and Care Excellence, before highlighting aspects of ongoing research aimed at addressing these inadequacies. Methods: As well as the published report More Care, Less Pathway, we draw upon preliminary qualitative evidence from 19 semistructured interviews conducted with academics specializing in economics and/or end-of-life care. Conclusions: While there is a need for increased funding in the short term (highlighted in recent reviews), increasing funding to services that have little evidence base appears to be an irresponsible long-term strategy. Hence there should also be increased investment in research and increased emphasis in particular on developing economic tools to evaluate services. [ABSTRACT FROM AUTHOR]