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Background: Shared decision-making is a key element of person-centred care and promoted as the favoured model in preference-sensitive decision-making. Limitations to implementation have been observed, and barriers and limitations, both generally and in the palliative setting, have been highlighted. More knowledge about the process of shared decision-making in palliative cancer care would assist in addressing these limitations. Aim: To identify and synthesise qualitative data on how people with cancer, informal carers and healthcare professionals experience and perceive shared decision-making in palliative cancer care. Design: A systematic review and metasynthesis of qualitative studies. We analysed data using inductive thematic analysis. Data sources: We searched five electronic databases (MEDLINE, EMBASE, PsycINFO, CINAHL and Scopus) from inception until June 2023, supplemented by backward searches. Results: We identified and included 23 studies, reported in 26 papers. Our analysis produced four analytical themes; (1) Overwhelming situation of 'no choice', (2) Processes vary depending on the timings and nature of the decisions involved, (3) Patient-physician dyad is central to decision-making, with surrounding support and (4) Level of involvement depends on interactions between individuals and systems. Conclusion: Shared decision-making in palliative cancer care is a complex process of many decisions in a challenging, multifaceted and evolving situation where equipoise and choice are limited. Implications for practice: Implementing shared decision-making in clinical practice requires (1) clarifying conceptual confusion, (2) including members of the interprofessional team in the shared decision-making process and (3) adapting the approach to the ambiguous, existential situations which arise in palliative cancer care. [ABSTRACT FROM AUTHOR]

Background: Older people with severe frailty are nearing the end of life but their needs are often unknown and unmet. Systematic ways to capture and measure the needs of this group are required. Patient reported Outcome Measures (PROMs) & Patient reported Experience Measures (PREMs) are possible tools to assist this. Aim: To establish whether, and in what ways, the needs of older people living with severe frailty are represented within existing PROMs and PREMs and to examine the extent to which the measures have been validated with this patient group. Design: The scoping review follows the method of Arksey and O'Malley. Results: Seventeen papers from 9 countries meeting the inclusion criteria and 18 multi-dimensional measures were identified: 17 PROMs, and 1 PROM with PREM elements. Seven out of the 18 measures had evidence of being tested for validity with those with frailty. No measure was developed specifically for a frail population. Using the adapted framework of palliative need, five measures covered all five domains of palliative need (IPOS, ICECAP-SCM, PDI, WHOQOL-BREF, WHOQOL-OLD). The coverage of items within the domains varied between the measures. Conclusion: Existing PROMs and PREMs are not well designed for what we know about the needs of older people with severe frailty. Future research should firstly focus on adapting and validating the existing measures to ensure they are fit for purpose, and secondly on developing a better understanding of how measures are used to deliver/better person-centred care. [ABSTRACT FROM AUTHOR]

Background: Parental involvement in the decision-making processes about medical treatment for children with life-limiting conditions is recognised as good practice. Previous research highlighted factors affecting the decision-making process, but little is known about how parents experience their participation. Aim: To explore how parents experience their participation in the process of decision-making about treatment and future care for their children with life-limiting conditions. Design: A systematically constructed review using narrative synthesis. The PRISMA guidelines were followed to report the findings. Databases Medline, EMBASE, SCOPUS, CINAHL and PsycINFO were searched up to December 2023. The study protocol was registered at PROSPERO (RN CRD42021215863). Results: From the initial 2512 citations identified, 28 papers met the inclusion criteria and were included in the review. A wide range of medical decisions was identified; stopping general or life-sustaining treatment was most frequent. Narrative synthesis revealed six themes: (1) Temporal aspects affecting the experience with decision-making; (2) Losing control of the situation; (3) Transferring the power to decide to doctors; (4) To be a 'good' parent and protect the child; (5) The emotional state of parents and (6) Sources of support to alleviate the parental experience. Conclusions: Parental experiences with decision-making are complex and multifactorial. Parents' ability to effectively participate in the process is limited, as they are not empowered to do so and the circumstances in which the decisions are taking place are challenging. Healthcare professionals need to support parental involvement in an effective way instead of just formally asking them to participate. [ABSTRACT FROM AUTHOR]

Background: Older people living with multimorbidity are projected to become the main recipients of palliative care in the coming decades, yet there is limited evidence regarding their expressed palliative care needs to inform person-centred care. Aim: To understand the palliative care needs of community-dwelling people aged ⩾60 living with multimorbidity in the last 2 years of life. Design: A scoping review following Arksey and O'Malley. Data sources: Three international electronic databases (CINAHL, Ovid Medline, PsycINFO) were searched from March 2018 to December 2021. Reference lists were hand searched. Eligible papers were those reporting empirical data on older people's needs. Results: From 985 potential papers, 28 studies were included, published between 2002 and 2020; sixteen quantitative, nine qualitative and three mixed methods. Data were extracted and presented under the holistic palliative care domains of need: physical, psychological, social, spiritual, and additionally practical needs. Different measurement tools (n = 29) were used, of which 20 were multidimensional. Primacy in reporting was given to physical needs, most commonly pain and function. Social and practical needs were often prioritised by older people themselves, including maintaining social connections and accessing and receiving individualised care. Conclusion: Identifying the palliative care needs that matter most to older people with multimorbidity requires the recognition of their concerns, as well as their symptoms, across a continuum of living and dying. Available evidence is superficial. Supporting end of life provision for this growing and underserved population necessitates a shift to tailored multidimensional tools and community focussed integrated care services. [ABSTRACT FROM AUTHOR]

Background: In order to provide responsive, individualised and personalised care, there is now greater engagement with patients, families and carers in designing health services. Out-of-hours care is an essential component of community palliative care. However, little is known about how patients, families and carers have been involved in the planning and design of these services. Aim: To systematically search and review the research literature that reports on how out-of-hours palliative care services are provided in the community and to identify the extent to which the principles of co-design have been used to inform the planning and design of these services. Design: Systematic literature search and review. Data sources: A systematic search for published research papers from seven databases was conducted in MEDLINE, PsycINFO, Embase, Emcare, PubMed, CINAHL and Web of Science, from January 2010 and December 2021. Reference list searches of included papers were undertaken to source additional relevant literature. A manifest content analysis was used to analyse the data. Results: A total of 77 papers were included. The majority of out-of-hours services in the community were provided by primary care services. The review found little evidence that patients, families or carers were involved in the planning or development of out-of-hours services. Conclusion: Incorporating patients, families and carers priorities and preferences in the planning and designing of out-of-hours palliative care service is needed for service providers to deliver care that is more patient-centred. Adopting the principles of co-design may improve how out-of-hours care scan be delivered. [ABSTRACT FROM AUTHOR]

Many individuals with advanced dementia die in hospital, despite preferring home death. Existing evidence of factors affecting their place of death is inconsistent. To inform policies/practices for meeting needs/preferences, systematically establishing the evidence is pertinent, particularly given the exponential rise in advanced dementia prevalence.To identify factors influencing where people with advanced dementia die.This systematic review with meta-analysis was registered on PROSPERO (CRD42022366722). Medline, CINAHL, PsycINFO, SocINDEX and a grey literature database, Overton, were searched on 21/12/2022, supplemented by hand-searching/citation tracking. Papers reporting quantitative data on factors associated with place of death in advanced dementia were included and appraised using QualSyst. Data were analysed using random effects with the certainty of evidence determined using the GRADE criteria.Thirty-three papers involving >5 million individuals (mean age = 89.2 years) were included. Long-term care setting deaths were relatively common but hospice deaths were rarer. Marriage’s association with home death underscores social networks’ importance, while younger age’s and male gender’s associations with hospital death demonstrate patients’ and families’ interdependency. Pneumonia/COPD’s opposing effects on hospital deaths with cancer/functional impairment highlight the challenges of advanced dementia care. Unlike hospital/nursing home bed availability’s lack of effect, capitated funding (fixed-amount-per-patient-per-period) decreased hospital death likelihood.This comprehensive review of place of death determinants highlight the profound challenges of advanced dementia end-of-life care. Given that bed capacity did not affect place of death, a capitation-based, integrated palliative care model would appear more likely to meet patients’ needs in a resource-constrained environment. [ABSTRACT FROM AUTHOR]

Background: People with an advanced progressive illness and their caregivers frequently experience anxiety, uncertainty and anticipatory grief. Traditional approaches to address psychological concerns aim to modify dysfunctional thinking; however, this is limited in palliative care, as often concerns area valid and thought modification is unrealistic. Acceptance and Commitment Therapy is a mindfulness-based behavioural therapy aimed at promoting acceptance and valued living even in difficult circumstances. Evidence on its value in palliative care is emerging. Aims: To scope the evidence regarding Acceptance and Commitment Therapy for people with advanced progressive illness, their caregivers and staff involved in their care. Design: Systematic scoping review using four databases (Medline, PsychInfo, CINAHL and AMED), with relevant MeSH terms and keywords from January 1999 to May 2023. Results: 1,373 papers were identified and 26 were eligible for inclusion. These involved people with advanced progressive illness (n = 14), informal caregivers (n = 4), palliative care staff (n = 3), bereaved carers (n = 3), and mixed groups (n = 2). Intervention studies (n = 15) showed that Acceptance and Commitment Therapy is acceptable and may have positive effects on anxiety, depression, distress, and sleep in palliative care populations. Observational studies (n = 11) revealed positive relationships between acceptance and adjustment to loss and physical function. Conclusion: Acceptance and Commitment Therapy is acceptable and feasible in palliative care, and may improve anxiety, depression, and distress. Full scale mixed-method evaluation studies are now needed to demonstrate effectiveness and cost-effectiveness amongst patients; while further intervention development and feasibility studies are warranted to explore its value for bereaved carers and staff. [ABSTRACT FROM AUTHOR]

Background: People with diagnoses of intellectual disability or serious mental illness have higher mortality rates due to physical comorbidities; better understanding is needed to guide best practice in provision of palliative care for these populations. Aims: To identify multivoiced perspectives, drawn from lived experience of: what works, and what does not, in palliative care for people with intellectual disability or serious mental illness; challenges in, and opportunities to improve, palliative care. Design: A systematically constructed qualitative meta-ethnography. Protocol published (PROSPERO: CRD42021236616). Data sources: MEDLINE, PsychINFO, CINAHL PLUS and Embase used without date limitations. Papers published in English, containing qualitative data on palliative care provision for people with a diagnosis of intellectual disability or serious mental illness were included. Global five-point strength score applied for relevance/quality appraisal. Results: Familiarity (of location, people and/or things) is important for good palliative care. Assumptions and misunderstandings about the role of mental capacity assessment to appropriately involve the patient in decision-making are common. Adapting training for palliative care staff to address concerns and beliefs about mental illness is one of the methods that helps avoid diagnostic overshadowing. Proactive identification of service arrangements to meet needs of persons with personality, psychotic, delusional and bipolar affective disorders will help optimise care. Conclusions: Evidence, including the voices of people with intellectual disability or serious mental illness is urgently needed to guide efforts to improve their access to and experience of palliative care. More evidence is especially needed to understand, develop and implement best practice for people with psychosis, bipolar affective disorder, mania and personality disorder. [ABSTRACT FROM AUTHOR]

Background: Malignant bowel obstruction occurs in up to 50% of people with advanced ovarian and 15% of people with gastrointestinal cancers. Evaluation and comparison of interventions to manage symptoms are hampered by inconsistent evaluations of efficacy and lack of agreed core outcomes. The patient perspective is rarely incorporated. Aim: To synthesise the qualitative data regarding patient, caregiver and healthcare professionals' views and experience of malignant bowel obstruction to inform the development of a core outcome set for the evaluation of malignant bowel obstruction. Design: A qualitative systematic review was conducted, with narrative synthesis. The review protocol was registered prospectively (https://www.crd.york.ac.uk/prospero, CRD42020176393). Data sources: MEDLINE, EMBASE, CINAHL, PsycINFO and Scopus databases were searched for studies published between 2010 and 2021. Reference lists were screened for further relevant publications, and citation tracking was performed. Results: Nine papers were included, reporting on seven studies which described the views and experiences of malignant bowel obstruction through the perspectives of 75 patients, 13 caregivers and 62 healthcare professionals. Themes across the papers included symptom burden, diverse experiences of interventions, impact on patient quality of life, implications and trajectory of malignant bowel obstruction, mixed experience of communication and the importance of realistic goals of care. Conclusion: Some of the most devastating sequelae of malignant bowel obstruction, such as pain and psychological distress, are not included routinely in its clinical or research evaluation. These data will contribute to a wider body of work to ensure the patient and caregiver perspective is recognised in the development of a core outcome set. [ABSTRACT FROM AUTHOR]

Background: The impact of living with palliative care needs arising from COPD disrupts an individual's existential situation. However, no comprehensive synthesis of existing research has been published to determine the presentation and impact of existential suffering. Aim: To provide a synthesis of existing evidence on existential suffering for those living with palliative care needs arising from COPD. Design: This is an integrative review paper, undertaken using the methodological approach developed by Soares and reported in accordance with PRISMA guidelines. Data analysis was undertaking using an integrated convergent synthesis approach. Data sources: Nine electronic databases were searched from April 2019 to December 2019. A second search was undertaken in January 2021 to identify recently published papers meeting the inclusion and exclusion criteria. No date restrictions were imposed. Only papers published in the English Language were considered for inclusion. Empirical research papers employing qualitative and/or quantitative methodologies and systematic literature reviews were included. Articles were accepted for inclusion if they discussed any component of existential suffering when living with COPD and palliative care needs. Results: Thirty-five papers were included within this review comprising of seven systematic reviews, 10 quantitative studies and 18 qualitative studies. The following themes relating to existential suffering were found: Liminality, Lamented Life, Loss of Personal Liberty, Life meaning and Existential isolation. The absence of life meaning, and purpose was of most importance to participants. Conclusions: This review suggests existential suffering is present and of significant impact within the daily lives of those living with palliative care needs arising from COPD. The absence of life meaning has the most significant impact. Further research is required to understand the essential components of an intervention to address existential suffering for this patient group, to ensure holistic palliative care delivery. [ABSTRACT FROM AUTHOR]

Background: Deaths in the community are increasing. However, community palliative care out-of-hours is variable. We lack detailed understanding of how care is provided out-of-hours and the associated outcomes. Aim: To review systematically the components, outcomes and economic evaluation of community-based ‘out-of-hours’ care for patients near the end of life and their families. Design: Mixed method systematic narrative review. Narrative synthesis, development and application of a typology to categorise out-of-hours provision. Qualitative data were synthesised thematically and integrated at the level of interpretation and reporting. Data sources: Systematic review searching; MEDLINE, EMBASE, PsycINFO, CINAHL from January 1990 to 1st August 2022. Results: About 64 publications from 54 studies were synthesised (from 9259 retrieved). Two main themes were identified: (1) importance of being known to a service and (2) high-quality coordination of care. A typology of out-of-hours service provision was constructed using three overarching dimensions (service times, focus of team delivering the care and type of care delivered) resulting in 15 categories of care. Only nine papers were randomised control trials or controlled cohorts reporting outcomes. Evidence on effectiveness was apparent for providing 24/7 specialist palliative care with both hands-on clinical care and advisory care. Only nine publications reported economic evaluation. Conclusions: The typological framework allows models of out-of-hours care to be systematically defined and compared. We highlight the models of out-of-hours care which are linked with improvement of patient outcomes. There is a need for effectiveness and cost effectiveness studies which define and categorise out-of-hours care to allow thorough evaluation of services. [ABSTRACT FROM AUTHOR]

Background: An estimated 21 million children worldwide would benefit from palliative care input and over 7 million die each year. For parents of these children this is an intensely emotional and painful time through which they will need support. There is a lack of synthesised research about how parents experience the care delivered to their child at the end of life. Aim: To systematically identify and synthesise qualitative research on parents' experiences of end-of-life care of their child. Design: A qualitative evidence synthesis was conducted. The review protocol was registered in PROSPERO (CRD42021242946). Data sources: MEDLINE, EMBASE, CINAHL, PsycINFO and Web of Science databases were searched for qualitative studies published post-2000 to April 2020. Studies were appraised for methodological quality and data richness. Confidence in findings was assessed by GRADE-CERQual. Results: About 95 studies met the eligibility criteria. A purposive sample of 25 studies was taken, of good-quality papers with rich data describing the experience of over 470 parents. There were two overarching themes: parents of children receiving end-of-life care experienced a profound need to fulfil the parental role; and care of the parent. Subthemes included establishing their role, maintaining identity, ultimate responsibility, reconstructing the parental role, and continuing parenting after death. Conclusions: Services delivering end-of-life care for children need to recognise the importance for parents of being able to fulfil their parental role and consider how they enable this. What the parental role consists of, and how it's expressed, differs for individuals. Guidance should acknowledge the need to enable parents to parent at their child's end of life. [ABSTRACT FROM AUTHOR]

Background: Whilst there is a sense of holism existing within palliative care practice, what is not clear is the extent to which holism, as applied in recent palliative care practice, has been adequately researched. Currently, no reviews on this topic were identified through systematic and scoping review registries. Aim: To identify and describe the available published evidence on the key features of holism and the core domains underpinning the application of holism in relation to recent palliative care practice. Design: Scoping review using the Johanna Briggs Institute design. Data sources: MEDLINE, EMCARE, and CINAHL (Ovid), PsycINFO, SocINDEX, SCOPUS and Web of Science. (International, peer-reviewed, published papers in the English language from January 2010to December 2020). Results: Five studies met inclusion criteria. Two studies used qualitative methods, one used mixed-methods, and two were randomised controlled trials. The research investigated (1) frameworks for holistic care and (2) assessment tools applied in palliative care settings. Conclusions: The results from the review led to identifying key features of palliative care that were presented as interconnected aspects of holistic care domains in both assessments and interventions. The literature revealed a focus on curative and biomedical approaches to disease management with holistic aspects acknowledged, but not in the forefront of core service delivery. Holism was generally conceptualised as an overarching theoretical framework to palliative care service provision and positioned as an adjunct to palliative models of care. These findings point to a gap in research that links the concept of holism to applied palliative care practices. [ABSTRACT FROM AUTHOR]

Background: Digital health interventions are becoming increasingly important and may be particularly relevant for paediatric palliative care. In line with the aims of palliative care, digital health interventions should aim to maintain, if not improve, psychological wellbeing. However, the extent to which the psychological outcomes of digital health interventions are assessed is currently unknown. Aim: To identify and synthesise the literature exploring the impact of all digital health interventions on the psychological outcomes of patients and families receiving paediatric palliative care. Design: Systematic review and narrative synthesis. Data sources: MEDLINE, EMBASE, Health Management Information Consortium, PsycINFO, Cumulative Index to Nursing and Allied Health Literature and the Midwives Information & Resource Service were searched on the 27th July 2020, in addition to the first five pages of Google Scholar. To be included in the review, papers must have contained: quantitative or qualitative data on psychosocial outcomes, data from patients aged 0–18 receiving palliative care or their families, a digital health intervention, and been written in English. Results: Three studies were included in the review. All looked at the psychological impact of telehealth interventions. Papers demonstrated fair or good quality reporting but had small sample sizes and varied designs. Conclusions: Despite the design and development of digital health interventions that span the technological landscape, little research has assessed their psychosocial impact in the paediatric palliative care community. Whilst the evidence base around the role of these interventions continues to grow, their impact on children and their families must not be overlooked. [ABSTRACT FROM AUTHOR]

Background: Infection control measures during infectious disease outbreaks can have significant impacts on seriously ill and dying patients, their family, the patient-family connection, coping, grief and bereavement. Aim: To explore how family members of patients who are seriously ill or who die during infectious disease outbreaks are supported and cared for during serious illness, before and after patient death and the factors that influence family presence around the time of death. Design: Systematic review and narrative synthesis. Data sources: CINAHL, Medline, APA PsycInfo and Embase were searched from inception to June 2020. Forward and backward searching of included papers were also undertaken. Records were independently assessed against inclusion criteria. Included papers were assessed for quality, but none were excluded. Findings: Key findings from 14 papers include the importance of communication and information sharing, as well as new ways of using virtual communication. Restrictive visiting practices were understood, but the impact of these restrictions on family experience cannot be underestimated, causing distress and suffering. Consistent advice and information were critical, such as explaining personal protective equipment, which family found constraining and staff experienced as affecting interpersonal communication. Cultural expectations of family caregiving were challenged during infectious disease outbreaks. Conclusion: Learning from previous infectious disease outbreaks about how family are supported can be translated to the current COVID-19 pandemic and future infectious disease outbreaks. Consistent, culturally sensitive and tailored plans should be clearly communicated to family members, including when any restrictions may be amended or additional supports provided when someone is dying. [ABSTRACT FROM AUTHOR]

Background: Informal carers play a key supportive role for patients with chronic obstructive pulmonary disease. However, caring can have a considerable impact on health and wellbeing. Carers may have unidentified support needs that could be a target for intervention. Literature on the support needs of informal carers has not been fully synthesised, and our knowledge of the comprehensiveness of the Carer Support Needs Assessment Tool for these individuals is limited. Aim: To explore whether the Carer Support Needs Assessment Tool covers the support needs of carers of patients with chronic obstructive pulmonary disease identified in published literature. Design: English language studies were identified against predetermined inclusion/exclusion criteria through database searching. Further studies were identified through searching reference lists and citations of included papers. Papers were critically appraised and data extracted and synthesised by two reviewers. Identified needs were mapped to Carer Support Needs Assessment Tool questions. Data sources: MEDLINE, CINAHL, EMBASE, CDSR, ASSIA, PsycINFO and Scopus databases (Jan 1997–Dec 2017). Results: Twenty-four studies were included. Results suggest that carers have support needs in a range of domains including physical, social, psychological and spiritual. Many of these needs are unmet. Particular areas of concern relate to prolonged social isolation, accessing services, emotional support and information needs. Findings also suggest amendment of the Carer Support Needs Assessment Tool may be required relating to difficulties within relationship management. Conclusion: Evidence suggests that carers of patients with chronic obstructive pulmonary disease would benefit from identification and response to their support needs by healthcare professionals but to enable this, the Carer Support Needs Assessment Tool requires an additional question. Future planned work will explore this with carers of patients with chronic obstructive pulmonary disease. [ABSTRACT FROM AUTHOR]

Background: During the terminal withdrawal of life-sustaining measures for intensive care patients, the removal of respiratory support remains an ambiguous practice. Globally, perceptions and experiences of best practice vary due to the limited evidence in this area. Aim: To identify, appraise and synthesise the latest evidence around terminal withdrawal of mechanical ventilation in adult intensive care units specific to perceptions, experiences and practices. Design: Mixed methods systematic review and narrative synthesis. A review protocol was registered on PROSPERO (CRD42018086495). Data sources: Four electronic databases were systematically searched (Medline, Embase, CENTRAL and CINAHL). Obtained articles published between January 2008 and January 2020 were screened for eligibility. All included papers were appraised using relevant appraisal tools. Results: Twenty-five papers were included in the review. Findings from the included papers were synthesised into four themes: 'clinicians' perceptions and practices'; 'time to death and predictors'; 'analgesia and sedation practices'; 'physiological and psychological impact'. Conclusions: Perceptions, experiences and practices of terminal withdrawal of mechanical ventilation vary significantly across the globe. Current knowledge highlights that the time to death after withdrawal of mechanical ventilation is very short. Predictors for shorter duration could be considered by clinicians and guide the choice of pharmacological interventions to address distressing symptoms that patients may experience. Clinicians ought to prepare patients, families and relatives for the withdrawal process and the expected progression and provide them with immediate and long-term support following withdrawal. Further research is needed to improve current evidence and better inform practice guidelines. [ABSTRACT FROM AUTHOR]

Background: A substantial number of older adults die in residential aged care facilities, yet little is known about the characteristics of and how best to optimise medication use in the last year of life. Aim: The aim of this review was to map characteristics of medication use in aged care residents during the last year of life in order to examine key concepts related to medication safety and draw implications for further research and service provision. Design: A scoping review following Arskey and O'Malley's framework was conducted using a targeted keyword search, followed by assessments of eligibility based on title and content of abstracts and full papers. Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, the scoping review protocol was prospectively registered to the Open Science Framework on 27 November 2018. Data Sources: We searched MEDLINE, EMBASE, AMED, CINAHL and Cochrane databases to identify peer-reviewed studies published between 1937 and 2018, written in English and looking at medication use in individuals living in aged care facilities within their last year of life. Results: A total of 30 papers were reviewed. Five key overarching themes were derived from the analysis process: (1) access to medicines at the end of life, (2) categorisation and classes: medicines and populations, (3) polypharmacy and total medication numbers, (4) use of symptomatic versus preventive medications and (5) 'inappropriate' medications. Conclusion: Number of prescriptions or blunt categorisations of medications to assess their appropriateness are unlikely to be sufficient to promote well-being and medication safety for older people in residential aged care in the final stages of life. [ABSTRACT FROM AUTHOR]

Background: Despite being a terminal neurodegenerative disease, the role of palliative care is less recognised for motor neurone disease than for other life-limiting conditions. Understanding the experiences of, and need for, palliative care for patients and carers is key to configuring optimal policy and healthcare services. Aim: To explore the experiences of, and need for, palliative care of people with motor neurone disease and their informal carers across the disease trajectory. Design: A systematic review of qualitative research conducted using Thematic Synthesis – PROSPERO registration CRD42017075311. Data Sources: Four electronic databases were searched (MEDLINE, CINAHL, PsycINFO, Social Science Citation Index) using terms for motor neurone disease, amyotrophic lateral sclerosis, palliative care, and qualitative research, from inception to November 2018. Included papers were data extracted and assessed for quality. Results: A total of 41 papers were included, representing the experiences of 358 people with motor neurone disease and 369 caregivers. Analytical themes were developed detailing patients' and carers' experiences of living with motor neurone disease and of palliative care through its trajectory including response to diagnosis, maintaining control, decision-making during deterioration, engaging with professionals, planning for end-of-life care, bereavement. Conclusion: The review identified a considerable literature exploring the care needs of people with motor neurone disease and their carers; however, descriptions of palliative care were associated with the last days of life. Across the disease trajectory, clear points were identified where palliative care input could enhance patient and carer experience of the disease, particularly at times of significant physical change. [ABSTRACT FROM AUTHOR]

Background: Volunteers make a major contribution to palliative care but little is known specifically about hospital palliative care volunteers. Aim: The aim of this study was to understand the role and experience of hospital palliative care volunteers. Design: Systematic review and narrative synthesis. Data sources: CINAHL, Embase, Medline, PsycINFO, PubMed and three dissertation databases were searched from inception to June 2019. A forward and backward search of included papers in key journals was also undertaken. Records were independently assessed against inclusion criteria by authors. Included papers were assessed for quality, but none were excluded. Results: In total, 14 papers were included. Hospital palliative care volunteers were mostly female, aged above 40 years, and training varied considerably. Volunteers faced unique challenges in supporting dying patients due to the nature of hospital care, rapid patient turnover and the once-off nature of support. Volunteer roles were diverse, with some providing hands-on care, but most focused on 'being with' the dying patient. Volunteers were appreciated for providing psychosocial support, seen as complementary to, rather than replacing the work of health professionals. Given volunteers were often required to work across multiple wards, establishing positive work relationships with health professionals was challenging. Divergent views about whether the volunteer was part of or external to the team impacted volunteers' experience and perceptions of the value of their contribution. Conclusion: Hospital palliative care volunteers face unique challenges in supporting terminally ill patients. Volunteer support in hospital settings is possible and appropriate, if sufficient support is available to mitigate the challenges associated with complex, high-acuity care. [ABSTRACT FROM AUTHOR]

Background: People with dementia requiring palliative care have multiple needs, which are amplified in long-term care settings. The European Association for Palliative Care White Paper offers recommendations for optimal palliative care in dementia integral for this population, providing useful guidance to inform interventions addressing their specific needs. Aim: The aim of this study is to describe the components of palliative care interventions for people with dementia in long-term care focusing on shared decision-making and examine their alignment to the European Association for Palliative Care domains of care. Design: Systematic review with narrative synthesis (PROSPERO ID: CRD42018095649). Data sources: Four databases (MEDLINE, CINAHL, PsycINFO and CENTRAL) were searched (earliest records – July 2019) for peer-reviewed articles and protocols in English, reporting on palliative care interventions for people with dementia in long-term care, addressing European Association for Palliative Care Domains 2 (person-centred) or 3 (setting care goals) and ⩾1 other domain. Results: Fifty-one papers were included, reporting on 32 studies. For each domain (1–10), there were interventions found aiming to address its goal, although no single intervention addressed all domains. Domain 7 (symptom management; n = 19), 6 (avoiding overly aggressive treatment; n = 18) and 10 (education; n = 17) were the most commonly addressed; Domain 5 (prognostication; n = 7) and 4 (continuity of care; n = 2) were the least addressed. Conclusion: Almost all domains were addressed across all interventions currently offered for this population to various degrees, but not within a singular intervention. Future research optimally needs to be theory driven when developing dementia-specific interventions at the end of life, with the European Association for Palliative Care domains serving as a foundation to inform the best care for this population. [ABSTRACT FROM AUTHOR]

Background: We have undertaken a systematically searched literature review using a realist logic of analysis to help synthesise the diverse range of literature available on hospice at home services. Aim: To find out in the existing literature what features of hospice at home models work best, for whom and under what circumstances. Design: A realist logic of analysis was applied to synthesise the evidence focusing on mechanisms by which an intervention worked (or did not work). An initial programme theory was developed using the National Association for Hospice at Home standards, Normalisation Process Theory and through refinement using stakeholder engagement. Data sources: PubMed, Science Direct, AMED, BNI, CINAHL, EMBASE, Health Business Elite, HMIC, Medline, PsychINFO, SCOPUS, Web of Science, DARE, Google Scholar, NHS Evidence, NIHR CRN portfolio database, NIHR journal library of funded studies, including searches on websites of relevant professional bodies (August 2014, June 2017, June 2019). Results: Forty-nine papers were reviewed, of which 34 contributed evidence to at least one of the eight theory areas: marketing and referral, sustainable funding model, service responsiveness and availability, criteria for service admission, knowledge and skills of care providers, integration and coordination, anticipatory care, support directed at carers. Conclusions: Our literature review showed how it was possible to develop a coherent framework and test it against 34 published papers and abstracts. Central to this review was theory building, and as further evidence emerges, our programme theories can be refined and tested against any new empirical evidence. [ABSTRACT FROM AUTHOR]

Background: Assessing pain in infants, children and young people with life-limiting conditions remains a challenge due to diverse patient conditions, types of pain and often a reduced ability or inability of patients to communicate verbally. Aim: To systematically identify pain assessment tools that are currently used in paediatric palliative care and examine their psychometric properties and feasibility and make recommendations for clinical practice. Design: A systematic literature review and evaluation of psychometric properties of pain assessment tools of original peer-reviewed research published from inception of data sources to April 2021. Data sources: PsycINFO via ProQuest, Web of Science Core, Medline via Ovid, EMBASE, BIOSIS and CINAHL were searched from inception to April 2021. Hand searches of reference lists of included studies and relevant reviews were performed. Results: From 1168 articles identified, 201 papers were selected for full-text assessment. Thirty-four articles met the eligibility criteria and we examined the psychometric properties of 22 pain assessment tools. Overall, the Faces Pain Scale-Revised (FPS-R) had high cross-cultural validity, construct validity (hypothesis testing) and responsiveness; while the Faces, Legs, Activity, Cry and Consolability (FLACC) scale and Paediatric Pain Profile (PPP) had high internal consistency, criterion validity, reliability and responsiveness. The number of studies per psychometric property of each pain assessment tool was limited and the methodological quality of included studies was low. Conclusion: Balancing aspects of feasibility and psychometric properties, the FPS-R is recommended for self-assessment, and the FLACC scale/FLACC Revised and PPP are the recommended observational tools in their respective age groups. [ABSTRACT FROM AUTHOR]

Background: Despite recommendations, people with heart failure have poor access to palliative care. Aim: To identify the evidence in relation to palliative care for people with symptomatic heart failure. Design: Systematic review and narrative synthesis. (PROSPERO CRD42016029911) Data sources: Databases (Medline, Cochrane database, CINAHL, PsycINFO, HMIC, CareSearch Grey Literature), reference lists and citations were searched and experts contacted. Two independent reviewers screened titles and abstracts and retrieved papers against inclusion criteria. Data were extracted from included papers and studies were critically assessed using a risk of bias tool according to design. Results: Thirteen interventional and 10 observational studies were included. Studies were heterogeneous in terms of population, intervention, comparator, outcomes and design rendering combination inappropriate. The evaluation phase studies, with lower risk of bias, using a multi-disciplinary specialist palliative care intervention showed statistically significant benefit for patient-reported outcomes (symptom burden, depression, functional status, quality of life), resource use and costs of care. Benefit was not seen in studies with a single component/discipline intervention or with higher risk of bias. Possible contamination in some studies may have caused under-estimation of effect and missing data may have introduced bias. There was no apparent effect on survival. Conclusion: Overall, the results support the use of multi-disciplinary palliative care in people with advanced heart failure but trials do not identify who would benefit most from specialist palliative referral. There are no sufficiently robust multi-centre evaluation phase trials to provide generalisable findings. Use of common population, intervention and outcomes in future research would allow meta-analysis. [ABSTRACT FROM AUTHOR]

Background: The anticipatory prescribing of injectable medications to provide end-of-life symptom relief is an established community practice in a number of countries. The evidence base to support this practice is unclear. Aim: To review the published evidence concerning anticipatory prescribing of injectable medications for adults at the end of life in the community. Design: Systematic review and narrative synthesis. Registered in PROSPERO: CRD42016052108, on 15 December 2016 (https://www.crd.york.ac.uk/prospero/display%5frecord.php?RecordID=52108). Data sources: Medline, CINAHL, Embase, PsycINFO, Web of Science, Cochrane Library, King's Fund, Social Care Online, and Health Management Information Consortium databases were searched up to May 2017, alongside reference, citation, and journal hand searches. Included papers presented empirical research on the anticipatory prescribing of injectable medications for symptom control in adults at the end of life. Research quality was appraised using Gough's 'Weight of Evidence' framework. Results: The search yielded 5099 papers, of which 34 were included in the synthesis. Healthcare professionals believe anticipatory prescribing provides reassurance, effective symptom control, and helps to prevent crisis hospital admissions. The attitudes of patients towards anticipatory prescribing remain unknown. It is a low-cost intervention, but there is inadequate evidence to draw conclusions about its impact on symptom control and comfort or crisis hospital admissions. Conclusion: Current anticipatory prescribing practice and policy is based on an inadequate evidence base. The views and experiences of patients and their family carers towards anticipatory prescribing need urgent investigation. Further research is needed to investigate the impact of anticipatory prescribing on patients' symptoms and comfort, patient safety, and hospital admissions. [ABSTRACT FROM AUTHOR]

Background: Delirium is common in palliative care settings and is distressing for patients, their families and clinicians. To develop effective interventions, we need first to understand current delirium care in this setting. Aim: To understand patient, family, clinicians' and volunteers' experience of delirium and its care in palliative care contexts. Design: Qualitative systematic review and thematic synthesis (PROSPERO 2018 CRD42018102417). Data sources: The following databases were searched: CINAHL, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, Embase, MEDLINE and PsycINFO (2000–2020) for qualitative studies exploring experiences of delirium or its care in specialist palliative care services. Study selection and quality appraisal were independently conducted by two reviewers. Results: A total of 21 papers describing 16 studies were included. In quality appraisal, trustworthiness (rigour of methods used) was assessed as high (n = 5), medium (n = 8) or low (n = 3). Three major themes were identified: interpretations of delirium and their influence on care; clinicians' responses to the suffering of patients with delirium and the roles of the family in delirium care. Nursing staff and other clinicians had limited understanding of delirium as a medical condition with potentially modifiable causes. Practice focused on alleviating patient suffering through person-centred approaches, which could be challenging with delirious patients, and medication use. Treatment decisions were also influenced by the distress of family and clinicians and resource limitations. Family played vital roles in delirium care. Conclusions: Increased understanding of non-pharmacological approaches to delirium prevention and management, as well as support for clinicians and families, are important to enable patients' multi-dimensional needs to be met. [ABSTRACT FROM AUTHOR]

Background: Palliative sedation is the monitored use of medications intended to relieve refractory suffering. The assessment of palliative sedation has been focused on the assess of the level of consciousness but a more comprehensive approach to assessment is needed. Aim: To understand how the potential effects and possible adverse events of palliative sedation in Palliative Care patients are measured. Design: Integrative review of most recent empirical research. Data sources: Cochrane Library, Embase, Medline, PubMed, and CINAHL were searched (2010–2020) using the terms sedation, palliative care, terminal care, assessment. Limits included studies in English and adults. Inclusion criteria were: scientific assessment papers, effects and complications of palliative sedation; patients with incurable illness. Results: Out of 588 titles, 26 fulfilled inclusion criteria. The Discomfort Scale-Dementia of Alzheimer Type and Patient Comfort Score were used to assess comfort. The Richmond Agitation-Sedation Scale and The Ramsay Sedation Scale are the most used to measure its effect. Refractory symptoms were assessed through multi-symptom or specific scales; except for psychological or existential distress. Delirium was assessed using the Memorial Delirium Assessment Scale and pain through the Critical Care Pain Observation Tool. The use of technical approaches to monitor effects is upcoming. There is lack of measurement of possible adverse events and variability in timing measurement. Conclusions: There are palliative care validated instruments to assess the sedation effect but this review shows the need for a more standardized approach when assessing it. Instruments should be used within an experienced and trained expert, providing a holistic assessment. [ABSTRACT FROM AUTHOR]

Background: Ethical issues arise daily in the delivery of palliative care. Despite much (largely theoretical) literature, evidence from specialist palliative care practitioners about day-to-day ethical challenges has not previously been synthesised. This evidence is crucial to inform education and adequately support staff. Aim: To synthesise the evidence regarding the ethical challenges which specialist palliative care practitioners encounter during clinical practice. Design: Systematic review with narrative synthesis (PROSPERO registration CRD42018105365). Quality was dual-assessed using the Mixed-Methods Appraisal Tool. Tabulation, textural description, concept mapping and thematic synthesis were used to develop and present the narrative. Data sources: Seven databases (MEDLINE, Philosopher's Index, EMBASE, PsycINFO, LILACS, Web of Science and CINAHL) were searched from inception to December 2019 without language limits. Eligible papers reported original research using inductive methods to describe practitioner-reported ethical challenges. Results: A total of 8074 records were screened. Thirteen studies from nine countries were included. Challenges were organised into six themes: application of ethical principles; delivering clinical care; working with families; engaging with institutional structures and values; navigating societal values and expectations; philosophy of palliative care. Challenges related to specific scenarios/contexts rather than the application of general ethical principles, and occurred at all levels (bedside, institution, society, policy). Conclusion: Palliative care practitioners encounter a broad range of contextual ethical challenges, many of which are not represented in palliative care ethics training resources, for example, navigating institutional policies, resource allocation and inter-professional conflict. Findings have implications for supporting ethical practice and training practitioners. The lack of low- and middle- income country data needs addressing. [ABSTRACT FROM AUTHOR]

Background: Patient empowerment, defined as 'a process through which people gain greater control over decisions and actions affecting their health' (World Health Organization) is a key theme within global health and social care strategies. The benefits of incorporating empowerment strategies in care are well documented, but little is known about their application or impact for patients with advanced, life-limiting illness(s). Aim: To identify and synthesise the international evidence on patient empowerment for adults with advanced, life-limiting illness(s). Design: Systematic review (PROSPERO no. 46113) with critical interpretive synthesis methodology. Data sources: Five databases (MEDLINE, Embase, CINHAL, PsycINFO and Cochrane) were searched from inception to March 2018. Grey literature and reference list/citation searches of included papers were undertaken. Inclusion criteria: empirical research involving patients with advanced life-limiting illness including descriptions of, or references to, patient empowerment within the study results. Results: In all, 13 papers met inclusion criteria. Two qualitative studies explored patient empowerment as a study objective. Six papers evaluated interventions, referencing patient empowerment as an incidental outcome. The following themes were identified from the interpretive synthesis: self-identity, personalised knowledge in theory and practice, negotiating personal and healthcare relationships, acknowledgement of terminal illness, and navigating continued losses. Conclusion: There are features of empowerment, for patients with advanced life-limiting illness distinct to those of other patient groups. Greater efforts should be made to progress the empowerment of patients nearing the end of their lives. We propose that the identified themes may provide a useful starting point to guide the assessment of existing or planned services and inform future research. [ABSTRACT FROM AUTHOR]

Background: Effective recruitment to randomised controlled trials is critically important for a robust, trustworthy evidence base in palliative care. Many trials fail to achieve recruitment targets, but the reasons for this are poorly understood. Understanding barriers and facilitators is a critical step in designing optimal recruitment strategies. Aim: To identify, explore and synthesise knowledge about recruitment barriers and facilitators in palliative care trials using the '6 Ps' of the 'Social Marketing Mix Framework'. Design: A systematic review with narrative synthesis. Data sources: Medline, CINAHL, PsycINFO and Embase databases (from January 1990 to early October 2016) were searched. Papers included the following: interventional and qualitative studies addressing recruitment, palliative care randomised controlled trial papers or reports containing narrative observations about the barriers, facilitators or strategies to increase recruitment. Results: A total of 48 papers met the inclusion criteria. Uninterested participants (Product), burden of illness (Price) and 'identifying eligible participants' were barriers. Careful messaging and the use of scripts/role play (Promotion) were recommended. The need for intensive resources and gatekeeping by professionals were barriers while having research staff on-site and lead clinician support (Working with Partners) was advocated. Most evidence is based on researchers' own reports of experiences of recruiting to trials rather than independent evaluation. Conclusion: The 'Social Marketing Mix Framework' can help guide researchers when planning and implementing their recruitment strategy but suggested strategies need to be tested within embedded clinical trials. The findings of this review are applicable to all palliative care research and not just randomised controlled trials. [ABSTRACT FROM AUTHOR]

Background: General practitioners have overall responsibility for community care, including towards end of life. Current policy places generalists at the centre of palliative care provision. However, little is known about how patients and carers understand the general practitioner's role. Aims: To explore patient and carer perspectives of (1) the role of the general practitioner in providing palliative care to adult patients and (2) the facilitators and barriers to the general practitioner's capacity to fulfil this perceived role. Design: Systematic literature review and narrative synthesis. Data sources: Seven electronic databases (MEDLINE, Embase, PsycINFO, BNI, CINAHL, Cochrane and HMIC) were searched from inception to May 2017. Two reviewers independently screened papers at title, abstract and full-text stages. Grey literature, guideline, hand searches of five journals and reference list/citation searches of included papers were undertaken. Data were extracted, tabulated and synthesised using narrative, thematic analysis. Results: A total of 25 studies were included: 14 employed qualitative methods, 8 quantitative survey methods and 3 mixed-methods. Five key themes were identified: continuity of care, communication between primary and secondary care, contact and accessibility, communication between general practitioner and patient, and knowledge and competence. Conclusion: Although the terminology and context of general practice vary internationally, themes relating to the perceived role of general practitioners were consistent. General practitioners are considered well placed to provide palliative care due to their breadth of clinical responsibility, ongoing relationships with patients and families, and duty to visit patients at home and coordinate healthcare resources. These factors, valued by service users, should influence future practice and policy development. [ABSTRACT FROM AUTHOR]

Background: Access to community palliative care 'out-of-hours' – defined as care provided after the normal hours of work – is advocated globally. Healthcare assistants, who provide care under the direction of a qualified professional, are increasingly employed to help deliver such care, yet there is a little understanding regarding their role, responsibilities or contribution. Aim: The aim of this study was to identify the roles, responsibilities and contributions of healthcare assistants in out-of-hours community palliative care. Design: Scoping review Data sources: Five bibliographic databases (CINAHL, MEDLINE, EMBASE, PsycINFO and Scopus) and grey literature were searched using a predefined search strategy. The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews statement. Results: The search yielded six papers using quantitative, qualitative and mixed methods. Results highlighted a lack of recognition of the role and contribution of healthcare assistants. A concurrent theme was that healthcare assistants continually monitored and responded to patient's and family's physical and emotional needs; there was also self-reported evidence indicating patient and family benefit, such as maintaining a sense of normality and support to remain at home. Discussion: This review highlighted a dearth of evidence relating to the healthcare assistant role in out-of-hours palliative care. Limited evidence suggests they play a role, but that it is hidden and undervalued. Such invisibility will have a significant impact on the planning and delivery of out-of-hours palliative care. Future research is needed on role development for the benefit of patients and caregivers. [ABSTRACT FROM AUTHOR]

Background: Healthcare providers working in hospitals are frequently exposed to patients with palliative care needs. For most patients, these reflect non-specialist rather than specialist palliative care needs. Embedding palliative care principles early in patients' disease trajectories within acute care delivery in hospitals, however, is a challenge. How to best understand the experiences of those providing non-specialist palliative care in hospitals has not been systematically assessed. Aim: To synthesise the evidence on healthcare providers' views and experiences of non-specialist palliative care in hospitals. Design: A qualitative systematic review and thematic synthesis using Thomas and Harden's thematic synthesis framework. Data sources: Databases of MEDLINE, CINAHL, PsycINFO and EMBASE were searched from date of inception to March 2018. Studies were eligible for inclusion if they reported on healthcare providers' views and experiences of non-specialist palliative care in hospitals. Studies were appraised for quality but not excluded on that basis. The review was prospectively registered with the International Prospective Register of Systematic Reviews. Results: Thirty-nine papers of 37 studies were included, representing 985 hospital healthcare providers' views and experiences. Four major analytical themes emerged; 'Understanding of Palliative Care', 'Complexities of Communication', 'Hospital Ecosystem' and 'Doctors and Nurses – a Different Lens'. Conclusions: Non-specialist palliative care in hospitals is operationalised as care in the last weeks and days of life. The organisation of acute care, inter-disciplinary working practices, clinician attitudes, poor communication structures and lack of education and training in palliative care principles exacerbates poor implementation of this care earlier for patients in hospitals. [ABSTRACT FROM AUTHOR]

Background: Transfers from hospital or 'hospice palliative care units' to care homes for end-of-life care are an increasingly common part of clinical practice but are a source of anxiety and distress for patients, relatives and healthcare professionals. Aim: To understand the experiences of patients discharged to care homes for end-of-life care. Design: Systematic review and narrative synthesis of the UK literature concerning inpatient transfer from a hospital or hospice palliative care unit to a care home for end-of-life care. Results: The published literature is very limited: only three papers and one conference abstract were identified, all of low quality using Gough's weight of evidence assessment. No papers examined transfer from hospital: all were of transfers from hospices and were retrospective case note reviews. Many patients were reported to have been negative or ambivalent about moving and experienced feelings of anxiety or abandonment when transferred. Relatives were often either vehemently opposed or ambivalent. Although some came to accept transfer, others reported the transfer to have seriously affected their loved one's quality of life and that the process of finding a care home had been traumatic. No studies investigated patients' views prospectively, the views of staff or the processes of decision-making. Conclusion: The UK literature is very limited, despite such transfers being an increasingly common part of clinical practice and a source of concern to patients, relatives and staff alike. Further research is urgently needed in this area, especially studies of patients themselves, in order to understand their experiences and views. [ABSTRACT FROM AUTHOR]

Background: Families' experiences of assisted dying are under-investigated and families are rarely considered in clinical guidelines concerning assisted dying. Aim: To systematically review family experiences of assisted dying. Design: A systematic literature review using thematic synthesis. Data sources: MEDLINE, Embase, CINAHL, AMED (Allied and Complementary Medicine) and PsycINFO databases (January 1992 to February 2019). Studies investigating families' experiences on the practice of legalised assisted dying were included. We excluded studies prior to legalisation within the jurisdiction, secondary data analysis and opinion papers. Results: Nineteen articles met the inclusion criteria. Publications were derived from four countries: The Netherlands, United States (Oregon, Washington and Vermont), Canada and Switzerland. Dutch studies predominately investigated family involvement in euthanasia, while Swiss and American studies only reported on assisted suicide. Eleven studies had a qualitative design, using predominately in-depth interviews; seven were retrospective surveys. Five analytical themes represented families' experiences in assisted dying: (1) context of the decision, (2) grounding the decision, (3) cognitive and emotional work, (4) experiencing the final farewell and (5) grief and bereavement. The results showed that families can be very involved in supporting patients seeking assisted dying, where open communication is maintained. Family involvement appeared to be influenced by the type of legislation in their country and the families' perception of the social acceptability of assisted dying. Conclusion: Our data confirm that families across all jurisdictions are involved in assisted suicide decision and enactment. Family needs are under-researched, and clinical guidelines should incorporate recommendations about how to consider family needs and how to provide them with evidence-based tailored interventions. [ABSTRACT FROM AUTHOR]

Background: Effective communication between healthcare professionals and relatives of patients approaching the end-of-life is vital to ensure patients have a 'good death'. To improve communication, it is important to first identify how this is currently being accomplished. Aim: To review qualitative evidence concerning characteristics of communication about prognosis and end-of-life care between healthcare professionals and relatives of patients approaching the end-of-life. Design: Qualitative systematic review (PROSPERO registration CRD42017065560) using thematic synthesis. Peer-reviewed, English language articles exploring the content of conversations and how participants communicated were included. No date restrictions were applied. Quality of included studies was appraised using the Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research. Data sources: An electronic database search of CINAHL, MEDLINE, PsycINFO and EMBASE was performed. Results: Thirty-one papers were included. Seven themes were identified: highlighting deterioration; involvement in decision-making, post-decision interactional work, tailoring, honesty and clarity, specific techniques for information delivery and roles of different healthcare professionals. Varied levels of family involvement in decision-making were reported. Healthcare professionals used strategies to aid understanding and collaborative decision-making, such as highlighting the patient's deterioration, referring to patient wishes and tailoring information delivery. Doctors were regarded as responsible for discussing prognosis and decision-making, and nurses for providing individualized care. Conclusion: Findings suggest training could provide healthcare professionals with these strategies to improve communication. Interventions such as question prompt lists could help relatives overcome barriers to involvement in decision-making. Further research is needed to understand communication with relatives in different settings and with different healthcare professionals. [ABSTRACT FROM AUTHOR]

Background: The European Association for Palliative Care White Paper defined optimal palliative care in dementia based on evidence and expert consensus. Yet, we know little on how to achieve this for people with dementia living and dying at home. Aims: To examine evidence on home palliative care interventions in dementia, in terms of their effectiveness on end-of-life care outcomes, factors influencing implementation, the extent to which they address the European Association for Palliative Care palliative care domains and evidence gaps. Design: A systematic review of home palliative care interventions in dementia. Data sources: The review adhered to the PRISMA guidelines and the protocol was registered with PROSPERO (CRD42018093607). We searched four electronic databases up to April 2018 (PubMed, Scopus, Cochrane library and CINAHL) and conducted lateral searches. Results: We retrieved eight relevant studies, none of which was of high quality. The evidence, albeit of generally weak quality, showed the potential benefits of the interventions in improving end-of-life care outcomes, for example, behavioural disturbances. The interventions most commonly focused on optimal symptom management, continuity of care and psychosocial support. Other European Association for Palliative Care domains identified as important in palliative care for people with dementia, for example, prognostication of dying or avoidance of burdensome interventions were under-reported. No direct evidence on facilitators and barriers to implementation was found. Conclusions: The review highlights the paucity of high-quality dementia-specific research in this area and recommends key areas for future work, for example, the need for process evaluation to identify facilitators and barriers to implementing interventions. [ABSTRACT FROM AUTHOR]

Background: Facilitating advance care planning with community-dwelling frail elders can be challenging. Notably, frail elders' vulnerability to sudden deterioration leads to uncertainty in recognising the timing and focus of advance care planning conversations. Aim: To understand how advance care planning can be better implemented for community-dwelling frail elders and to develop a conceptual model to underpin intervention development. Design: A structured integrative review of relevant literature. Data sources: CINAHL, Embase, Ovid Medline, PsycINFO, Cochrane Library, and University of York Centre for Reviews and Dissemination. Further strategies included searching for policy and clinical documents, grey literature, and hand-searching reference lists. Literature was searched from 1990 until October 2018. Results: From 3043 potential papers, 42 were included. Twenty-nine were empirical, six expert commentaries, four service improvements, two guidelines and one theoretical. Analysis revealed nine themes: education and training, personal ability, models, recognising triggers, resources, conversations on death and dying, living day to day, personal beliefs and experience, and relationality. Conclusion: Implementing advance care planning for frail elders requires a system-wide approach, including providing relevant resources and clarifying responsibilities. Early engagement is key for frail elders, as is a shift from the current advance care planning model focussed on future ceilings of care to one that promotes living well now alongside planning for the future. The proposed conceptual model can be used as a starting point for professionals, organisations and policymakers looking to improve advance care planning for frail elders. [ABSTRACT FROM AUTHOR]

Background: Despite a fast-paced environment, the emergency clinician has a duty to meet the palliative patient's needs. Despite suggested models and interventions, this remains challenging in practice. Aim: To raise awareness of these challenges by exploring the experience of palliative care patients and their families and informal carers attending the emergency department, and of the clinicians caring for them. Design: Qualitative systematic literature review and thematic synthesis. Search terms related to the population (palliative care patients, family carers, clinicians), exposure (the emergency department) and outcome (experience). The search was international but restricted to English and used a qualitative filter. Title, abstracts and, where retrieved, full texts were reviewed independently by two reviewers against predefined inclusion criteria arbitrated by a third reviewer. Studies were appraised for quality but not excluded on that basis. Data sources: MEDLINE [1946-], Embase[1947-], CINAHL [1981-] and PsycINFO [1987-] with a bibliography search. Results: 19 papers of 16 studies were included from Australia (n = 5), the United Kingdom (n = 5), and United States (n = 9) representing 482 clinical staff involved in the emergency department (doctors, nurses, paramedics, social workers, technicians), 61 patients and 36 carers. Nine descriptive themes formed three analytic themes: 'Environment and Purpose', 'Systems of Care and Interdisciplinary Working' and 'Education and Training'. Conclusion: In the included studies, provision of emergency palliative care is a necessary purpose of the emergency department. Failure to recognise this, gain the necessary skills or change to systems better suited to its delivery perpetuates poor implementation of palliative care in this environment. [ABSTRACT FROM AUTHOR]

Background: Cancer patients in lower socioeconomic groups are significantly less likely to die at home and experience more barriers to access to palliative care. It is unclear whether receiving palliative care may mediate the effect of socioeconomic status on place of death. Aim: This review examines whether and how use of specialist palliative care may modify the effect of socioeconomic status on place of death. Design: A systematic review was conducted. Eligible papers were selected and the quality appraised by two independent reviewers. Data were synthesised using a narrative approach. Data sources: MEDLINE, Embase, CINAHL, PsycINFO and Web of Knowledge were searched (1997–2013). Bibliographies were scanned and experts contacted. Papers were included if they reported the effect of both socioeconomic status and use of specialist palliative care on place of death for adult cancer patients. Results: Nine studies were included. All study subjects had received specialist palliative care. With regard to place of death, socioeconomic status was found to have (1) no effect in seven studies and (2) an effect in one study. Furthermore, one study found that the effect of socioeconomic status on place of death was only significant when patients received standard specialist palliative care. When patients received more intense care adapted to their needs, the effect of socioeconomic status on place of death was no longer seen. Conclusion: There is some evidence to suggest that use of specialist palliative care may modify the effect of socioeconomic status on place of death. [ABSTRACT FROM AUTHOR]

Background: Discussion of religion and/or spirituality in the medical consultation is desired by patients and known to be beneficial. However, it is infrequent. We aimed to identify why this is so. Aim: We set out to answer the following research questions: Do doctors report that they ask their patients about religion and/or spirituality and how do they do it? According to doctors, how often do patients raise the issue of religion and/or spirituality in consultation and how do doctors respond when they do? What are the known facilitators and barriers to doctors asking their patients about religion and/or spirituality? Design: A mixed qualitative/quantitative review was conducted to identify studies exploring the physician’s perspective on discussion of religion and/or spirituality in the medical consultation. Data sources: We searched nine databases from inception to January 2015 for original research papers reporting doctors’ views on discussion of religion and/or spirituality in medical consultations. Papers were assessed for quality using QualSyst and results were reported using a measurement tool to assess systematic review guidelines. Results: Overall, 61 eligible papers were identified, comprising over 20,044 physician reports. Religion and spirituality are discussed infrequently by physicians although frequency increases with terminal illness. Many physicians prefer chaplain referral to discussing religion and/or spirituality with patients themselves. Such discussions are facilitated by prior training and increased physician religiosity and spirituality. Insufficient time and training were the most frequently reported barriers. Conclusion: This review found that physician enquiry into the religion and/or spirituality of patients is inconsistent in frequency and nature and that in order to meet patient needs, barriers to discussion need to be overcome. [ABSTRACT FROM AUTHOR]

Background: A core concept behind patient-centred approaches is the need to treat people with, and preserve, dignity in care settings. People receiving palliative care are one group who may have particularly sensitive needs in terms of their condition, symptoms and life expectancy. Dignity is more likely to be violated in hospital settings. Given the high percentage of people with palliative care needs who are admitted to hospital during their last year of life, the provision of dignity enhancing and preserving care in that setting is of vital importance. Aim: To examine international evidence relating to dignity and person-centred care for people with palliative care needs in the acute hospital setting. Design: A systematic literature review was conducted, incorporating data extraction, analysis and quality appraisal of included papers. Data sources: MEDLINE, CINAHL, PsycINFO, ASSIA, EMBASE, Cochrane Database and Web of Science. Inclusion dates: 1 January 2000–1 April 2014. Eligibility criteria: Adult palliative care, acute care setting, dignity or person-centred care. Results: In all, 33 papers met the inclusion criteria for the review. Papers highlighted the many and varied potential threats to dignity for people with palliative care needs in acute settings, including symptom control and existential distress, approaches and models in care provision and healthcare settings and design. Conclusion: Acute hospital staff require adequate training, including symptom control, and the correct environment in which to deliver dignified and person-centred end-of-life care. Specific models/approaches to care can be beneficial, if adequate training regarding implementation is given. The needs of family members also require consideration, particularly following bereavement. [ABSTRACT FROM AUTHOR]

Background: Cancer-associated thrombosis is common. Recommended treatment is daily injected low-molecular-weight heparin for 6 months. Most studies focus on prophylaxis and treatment; few have explored the patients' experience. Aims: To identify and synthesise the available literature concerning patients' experience of cancer-associated thrombosis. Design: Systematic literature review and qualitative thematic synthesis. Data source: MEDLINE, Embase, CINAHL, PsycINFO (until 10/2016; limited to English) were searched. Eligible papers were qualitative studies of adult patients' experience of cancer-associated thrombosis. Two researchers screened titles/abstracts/papers against inclusion criteria with recourse to a third for disagreements. Critical Appraisal Skills Programme qualitative checklist tool was used for quality appraisal. Results: A total of 1397 articles were identified. Five qualitative studies (total n = 92; age range 32-84 years) met the inclusion criteria. Participants had various cancer types. Most had advanced disease and were receiving palliative care. Four major themes emerged from the data: knowledge deficit (patients and clinicians), effects of cancer-associated thrombosis (physical and psychological), effects of anticoagulation and coping strategies. Conclusion: The cancer journey is difficult in itself, but thrombosis was an additional, frightening and unexpected burden. Although the association between cancer and thromboembolism is well-known, cancer patients are not routinely educated about the risk or warning symptoms/signs of thromboembolism which may otherwise be misattributed to the cancer by patient and clinician alike. This systematic review highlights the impact of cancer-associated thrombosis on the lives of cancer patients, and calls for education for patients and clinicians to be part of routine care and further work to address this patient priority. [ABSTRACT FROM AUTHOR]

Background: Although people with dementia receive substantial care from informal sources, there is limited research available that investigates how these carers experience end-of-life care. Aim: This review aimed to identify what is currently known about carers' experiences of providing end-of-life care to a family member or friend with dementia and draw implications for palliative care policy and service provision. Design: A scoping literature review was conducted, first using a targeted key word search, followed by assessments of eligibility based on title and then abstract content. Data sources: Records were sourced through PsycINFO, PubMed and CINAHL databases. Peer-reviewed papers published between 2000 and 2016, reporting on data collected directly from carers, were included for review. Results: Carers' experience centred on relationships (with care recipients, family and friends and health care professionals) and the specific context of caring for someone with dementia. These broad categories of carers' experiences had clear influences on them personally, particularly in relation to their sense of self and their wellbeing. Conclusion: Palliative care services would benefit from ensuring holistic approaches to supporting people with dementia, their carers and wider family networks. Tailoring services to the specific context of dementia would enable effective, personalised support throughout extended periods leading up to care recipient death as well as through the challenges faced beyond bereavement. [ABSTRACT FROM AUTHOR]

Background: Patients with palliative care needs do not access specialist palliative care services according to their needs. Clinical Nurse Specialists working across a variety of fields are playing an increasingly important role in the care of such patients, but there is limited knowledge of the extent to which their interventions are cost-effective. Objectives: To present results from a systematic review of the international evidence on the costs, resource use and costeffectiveness of Clinical Nurse Specialist-led interventions for patients with palliative care needs, defined as seriously ill patients and those with advanced disease or frailty who are unlikely to be cured, recover or stabilize. Design: Systematic review following PRISMA methodology. Data sources: Medline, Embase, CINAHL and Cochrane Library up to 2015. Studies focusing on the outcomes of Clinical Nurse Specialist interventions for patients with palliative care needs, and including at least one economic outcome, were considered. The quality of studies was assessed using tools from the Joanna Briggs Institute. Results: A total of 79 papers were included: 37 randomized controlled trials, 22 quasi-experimental studies, 7 service evaluations and other studies, and 13 economic analyses. The studies included a wide variety of interventions including clinical, support and education, as well as care coordination activities. The quality of the studies varied greatly. Conclusion: Clinical Nurse Specialist interventions may be effective in reducing specific resource use such as hospitalizations/rehospitalizations/admissions, length of stay and health care costs. There is mixed evidence regarding their cost-effectiveness. Future studies should ensure that Clinical Nurse Specialists' roles and activities are clearly described and evaluated. [ABSTRACT FROM AUTHOR]

Background: It is important to understand the costs of palliative and end-of-life care in order to inform decisions regarding cost allocation. However, economic research in palliative care is very limited and little is known about the range and extent of the costs that are involved in palliative care provision. Aim: To undertake a systematic review of the health and social care literature to determine the range of financial costs related to a palliative care approach and explore approaches used to measure these costs. Design: A systematic review of empirical literature with thematic synthesis. Study quality was evaluated using the Weight of Evidence Framework. Data sources: The databases CINAHL, Cochrane, PsycINFO and Medline were searched from 1995 to November 2015 for empirical studies which presented data on the financial costs associated with palliative care. Results: A total of 38 papers met our inclusion criteria. Components of palliative care costs were incurred within four broad domains: hospital care, community or home-based care, hospice care and informal care. These costs could be considered from the economic viewpoint of three providers: state or government, insurers/third-party/not-for-profit organisations and patient and family and/or society. A wide variety of costing approaches were used to derive costs. Conclusion: The evidence base regarding the economics of palliative care is sparse, particularly relating to the full economic costs of palliative care. Our review provides a framework for considering these costs from a variety of economic viewpoints; however, further research is required to develop and refine methodologies. [ABSTRACT FROM AUTHOR]

To determine whether modern medicine is facilitating 'good' deaths, appropriate measures of the quality of dying and death must be developed and utilized. The purpose of this paper is to identify quality of dying and death measurement tools and to determine their quality. MEDLINE (1950-2008), Healthstar (1966-2008), and CINAHL (1982-2008) were searched using keyword terms 'quality of dying/death' and 'good/bad death'. Papers that described a quality of dying and death measure or that aimed to measure the quality of dying and death were selected for review. The evaluation criteria included a description of the measure development (validated or ad hoc), the provision of a definition of quality of dying and death, an empirical basis for the measure, the incorporation of multiple domains and the subjective nature of the quality of dying and death construct, and responsiveness to change. Eighteen measures met the selection criteria. Six were published with some description of the development process and 12 were developed ad hoc. Less than half were based on an explicit definition of quality of dying and death and even fewer relied on a conceptual model that incorporated multidimensionality and subjective determination. The specified duration of the dying and death phase ranged from the last months to hours of life. Of the six published measures reviewed, the Quality of Dying and Death questionnaire (QODD) is the most widely studied and best validated. Strategies to measure the quality of dying and death are becoming increasingly rigorous. Further research is required to understand the factors influencing the ratings of the quality of dying and death. [ABSTRACT FROM AUTHOR]

Background: When healthcare professionals or other involved parties prevent eligible patients from entering a trial as a research subject, they are gatekeeping. This phenomenon is a persistent problem in palliative care research and thought to be responsible for the failure of many studies. Aim: To identify potential gatekeepers and explore their reasons for gatekeeping in palliative care research. Design: A ‘Review of Reasons’ based on the systematic Preferred Reporting Items for Systematic Reviews and Meta-Analyses approach and a thematic synthesis. Data source: PubMed, Embase, Cumulative Index to Nursing and Allied Health Literature and PsycINFO from 2000 to May 20 2015 were searched. Studies in children (aged <18 years) and patients with dementia were excluded. Results: Thirty papers on gatekeeping in palliative care research were included. Five groups of potential gatekeepers were identified: healthcare professionals, research ethics committees, management, relatives and researchers. The fear of burdening vulnerable patients was the most reported reason for gatekeeping. Other reasons included ‘difficulty with disclosure of health status’, ‘fear of burdening the patient’s relatives’, ‘doubts about the importance or quality of the study’, ‘reticent attitude towards research and (research) expertise’ and ‘logistics’. In hospice and homecare settings, the pursuit of comfort care may trigger a protective attitude. Gatekeeping is also rooted in a (perceived) lack of skills to recruit patients with advanced illness. Conclusion: Gatekeeping is motivated by the general assumption of vulnerability of patients, coupled with an emphasis on the duty to protect patients. Research is easily perceived as a threat to patient well-being, and the benefits appear to be overlooked. The patients’ perspective concerning study participation is needed to gain a full understanding and to address gatekeeping in palliative care research. [ABSTRACT FROM AUTHOR]

Background: Hospital-based specialist palliative care services are common, yet existing evidence of inpatient generalist providers’ perceptions of collaborating with hospital-based specialist palliative care teams has never been systematically assessed. Aim: To assess the existing evidence of inpatient generalist palliative care providers’ perceptions of what facilitates or hinders collaboration with hospital-based specialist palliative care teams. Design: Narrative literature synthesis with systematically constructed search. Data sources: PsycINFO, PubMed, Web of Science, Cumulative Index of Nursing and Allied Health Literature and ProQuest Social Services databases were searched up to December 2014. Individual journal, citation and reference searching were also conducted. Papers with the views of generalist inpatient professional caregivers who utilised hospital-based specialist palliative care team services were included in the narrative synthesis. Hawker’s criteria were used to assess the quality of the included studies. Results: Studies included (n = 23) represented a variety of inpatient generalist palliative care professionals’ experiences of collaborating with specialist palliative care. Effective collaboration is experienced by many generalist professionals. Five themes were identified as improving or decreasing effective collaboration: model of care (integrated vs linear), professional onus, expertise and trust, skill building versus deskilling and specialist palliative care operations. Collaboration is fostered when specialist palliative care teams practice proactive communication, role negotiation and shared problem-solving and recognise generalists’ expertise. Conclusion: Fuller integration of specialist palliative care services, timely sharing of information and mutual respect increase generalists’ perceptions of effective collaboration. Further research is needed regarding the experiences of non-physician and non-nursing professionals as their views were either not included or not explicitly reported. [ABSTRACT FROM AUTHOR]

Background: Informal carers of cancer patients with cachexia face additional challenges to those encountered by informal carers in general because of the central role food and eating play in everyday life. Patient weight loss and anorexia, core features of cancer cachexia, are frequent causes of distress in caregivers. Identification of quality of life issues can inform the development of interventions for both caregivers and patients and facilitate communication with healthcare professionals. Aim: To identify quality of life issues that are relevant to carers of cancer patients with cachexia. Design: A systematic review and thematic synthesis of the qualitative literature were conducted. Reporting followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Data sources: PubMed, ISI Web of Knowledge, EMBASE, MEDLINE, CINAHL, PsycINFO and PsycARTICLES were searched for publications dated from January 1980 to February 2015 using search terms relating to cancer, cachexia, quality of life and carers. Papers written in the English language, featuring direct quotes from the carers of adult patients with any cancer diagnosis and cachexia or problems with weight loss or anorexia, were included. Results: Five themes were extracted from the 16 identified studies. These highlighted the impact on everyday life, the attempts of some carers to take charge, the need for healthcare professional’s input, conflict with the patient and negative emotions. Conclusion: The complexity of caring for a cancer patient with cachexia translates into a range of problems and experiences for informal carers. By addressing the impact of caring for a patient with cancer cachexia on carers, both caregiver and patient quality of life may improve. [ABSTRACT FROM AUTHOR]