scholarly journals Inpatient transfer to a care home for end-of-life care: What are the views and experiences of patients and their relatives? A systematic review and narrative synthesis of the UK literature

2016 ◽  
Vol 31 (2) ◽  
pp. 102-108 ◽  
Author(s):  
Tabitha Thomas ◽  
Isla Kuhn ◽  
Stephen Barclay

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.

2019 ◽  
Vol 24 (12) ◽  
pp. 570-575
Author(s):  
Cathryn Smith ◽  
Gina Newbury

Despite many efforts made by health organisations to deliver effective end-of-life care to patients with dementia, research indicates that palliative care is predominantly aimed at patients with terminal cancer, and that patients with dementia face challenges in accessing end-of-life care. This article explores the views of health professionals on providing palliative care to those patients diagnosed with dementia within the community setting. A systematic review of seven qualitative studies was performed to identify the best available evidence. The findings show that effective palliative care for patients with dementia continues being affected by many barriers and challenges. Good practice seems to be inconsistent and fragmented throughout the UK and European countries, and many health professionals are faced with difficulties associated with services and financial implications, training and education, staff support, communication, family support and dementia care.


BMJ Open ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. e049486
Author(s):  
Aisha Macgregor ◽  
Alasdair Rutherford ◽  
Brendan McCormack ◽  
Jo Hockley ◽  
Margaret Ogden ◽  
...  

IntroductionPalliative and end-of-life care in care homes is often inadequate, despite high morbidity and mortality. Residents can experience uncontrolled symptoms, poor quality deaths and avoidable hospitalisations. Care home staff can feel unsupported to look after residents at the end of life. Approaches for improving end-of-life care are often education-focused, do not triage residents and rarely integrate clinical care. This study will adapt an evidence-based approach from Australia for the UK context called ‘Palliative Care Needs Rounds’ (Needs Rounds). Needs Rounds combine triaging, anticipatory person-centred planning, case-based education and case-conferencing; the Australian studies found that Needs Rounds reduce length of stay in hospital, and improve dying in preferred place of care, and symptoms at the end of life.Methods and analysisThis implementation science study will codesign and implement a scalable UK model of Needs Rounds. The Integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) framework will be used to identify contextual barriers and use facilitation to enable successful implementation. Six palliative care teams, working with 4–6 care homes each, will engage in two phases. In phase 1 (February 2021), stakeholder interviews (n=40) will be used to develop a programme theory to meet the primary outcome of identifying what works, for whom in what circumstances for UK Needs Rounds. Subsequently a workshop to codesign UK Needs Rounds will be run. Phase 2 (July 2021) will implement the UK model for a year. Prospective data collection will focus on secondary outcomes regarding hospitalisations, residents’ quality of death and care home staff capability of adopting a palliative approach.Ethics and disseminationFrenchay Research Ethics Committee (287447) approved the study. Findings will be disseminated to policy-makers, care home/palliative care practitioners, residents/relatives and academic audiences. An implementation package will be developed for practitioners to provide the tools and resources required to adopt UK Needs Rounds.Registration detailsRegistration details: ISRCTN15863801.


2018 ◽  
Vol 8 (3) ◽  
pp. 378.1-378
Author(s):  
Aamena Bharmal ◽  
Tessa Morgan ◽  
Stephen Barclay

BackgroundNearly 50% of all deaths in the UK occur in hospitals.1 The majority of these patients die in a generalist setting2 where their medical care is predominately provided by junior doctors. There is a growing recognition of a need to embed palliative care into doctors’ training.3Little evidence exists, however, concerning junior doctors’ current experiences of palliative care.AimsTo review the empirical literature between 2000 and 2018 concerning junior doctors experience of and preparation for palliative and end of life care.MethodsSystematic review and narrative synthesis of qualitative and quantitative studies within six databases to find empirical studies on junior doctors experience of adult palliative care in inpatient hospital or hospice settings.ResultsFrom the initial 6308 titles identified, 32 studies met the inclusion criteria with a further five identified from reference searching.Three key themes were identified:‘Significance of death and dying’‘Thrown into the deep end’‘Addressing the gaps’. All the studies provided evidence that junior doctors care for many dying patients very early in their career. Junior doctors do not feel adequately prepared to care for dying patients and feel unsupported when doing so. Junior doctors report emotional distress when caring for their first few dying patients, memories of which continue to affect them throughout their careers. Their attitudes towards end–of–life care varied: some reported it as a privilege while others associated it with a culture of disengagement that stigmatised dying patients.ConclusionsJunior doctors need further support, education and preparation for their exposure to palliative care. Experiential learning, reflective practice and role modelling are described as the most effective ways to learn palliative care and this also teaches them other transferrable skills such as communication, teamwork and professionalism that are vital for their future careers.References. Office for National Statistics Deaths Registered in England and Wales2016.. Gomes B, Higginson I. Where people die (1974–2030): Past trends, future projections and implications for care. Palliative Med2008;22:33–41.. General Medical Council. Tomorrow’s doctors: Recommendations on undergraduate medical education 2002 (2nd ed.). London: GMC.


2019 ◽  
Vol 33 (4) ◽  
pp. 399-414 ◽  
Author(s):  
Daniel Stow ◽  
Gemma Spiers ◽  
Fiona E Matthews ◽  
Barbara Hanratty

Background: The number of older people living and dying with frailty is rising, but our understanding of their end-of-life care needs is limited. Aim: To synthesise evidence on the end-of-life care needs of people with frailty. Design: Systematic review of literature and narrative synthesis. Protocol registered prospectively with PROSPERO (CRD42016049506). Data sources: Fourteen electronic databases (CINAHL, Cochrane, Embase, EThOS, Google, Medline, NDLTD, NHS Evidence, NICE, Open grey, Psychinfo, SCIE, SCOPUS and Web of Science) searched from inception to October 2017 and supplemented with bibliographic screening and reference chaining. Studies were included if they used an explicit definition or measure of frailty. Quality was assessed using the National Institute for Health tool for observational studies. Results: A total of 4,998 articles were retrieved. Twenty met the inclusion criteria, providing evidence from 92,448 individuals (18,698 with frailty) across seven countries. Thirteen different measures or definitions of frailty were used. People with frailty experience pain and emotional distress at levels similar to people with cancer and also report a range of physical and psychosocial needs, including weakness and anxiety. Functional support needs were high and were highest where people with frailty were cognitively impaired. Individuals with frailty often expressed a preference for reduced intervention, but these preferences were not always observed at critical phases of care. Conclusion: People with frailty have varied physical and psychosocial needs at the end of life that may benefit from palliative care. Frailty services should be tailored to patient and family needs and preferences at the end of life.


Author(s):  
Helen Yue-Lai Chan ◽  
Cecilia Nim-Chee Chan ◽  
Chui-Wah Man ◽  
Alice Dik-Wah Chiu ◽  
Faith Chun-Fong Liu ◽  
...  

Integrating the palliative care approach into care home service to address the complex care needs of older adults with frailty or advanced diseases has been increasingly recognized. However, such a service is underdeveloped in Hong Kong owing to socio-cultural and legal concerns. We adopted a modified Delphi study design to identify the key components for the delivery of palliative and end-of-life care in care home settings for the local context. It was an iterative staged method to assimilate views of experts in aged care, palliative care, and care home management. A multidisciplinary expert panel of 18 members consented to participate in the study. They rated their level of agreement with 61 candidate statements identified through a scoping review in two rounds of anonymous surveys. The steering group revised the statements in light of the survey findings. Eventually, the finalized list included 28 key statements concerning structure and process of care in seven domains, namely policy and infrastructure, education, assessment, symptom management, communication, care for dying patients, and family support. The findings of this study underscored concerns regarding the feasibility of statements devised at different levels of palliative care development. This list would be instrumental for regions where the development of palliative and end-of-life care services in care home setting is at an initial stage.


2018 ◽  
Vol 32 (6) ◽  
pp. 1042-1054 ◽  
Author(s):  
Caroline Mogan ◽  
Mari Lloyd-Williams ◽  
Karen Harrison Dening ◽  
Christopher Dowrick

Background: It is reported that, given the right support, most people would prefer to die at home, yet a very small minority of people with dementia do so. At present, knowledge gaps remain on how best to support end-of-life care at home for people with dementia. Aim: To identify and understand the challenges and facilitators of providing end-of-life care at home for people with dementia. Design: Narrative synthesis of qualitative and quantitative data. Data sources: The review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A systematic literature search was conducted across six electronic databases (AMED, BNI, CINAHL, EMBASE, MEDLINE and PsycINFO) and reference lists of key journals were searched up to July 2017. Results: Searches returned 1949 unique titles, of which seven studies met all the eligibility criteria (four quantitative and three qualitative). Six key themes were identified – four facilitators and two challenges. Facilitators included ‘support from health care professionals’, ‘informal caregiver resilience and extended social networks’, ‘medications and symptom management’ and ‘appropriate equipment and home adaptations’. Challenges included ‘issues with professional services’ and ‘worsening of physical or mental health’. Conclusion: People with dementia may not always require specialist palliative care at the end of life. Further research is required to overcome the methodological shortcomings of previous studies and establish how community development approaches to palliative care, such as compassionate communities, can support families to allow a greater number of people with dementia to die at home.


2019 ◽  
Vol 33 (7) ◽  
pp. 726-742 ◽  
Author(s):  
Rose Miranda ◽  
Frances Bunn ◽  
Jennifer Lynch ◽  
Lieve Van den Block ◽  
Claire Goodman

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.


2012 ◽  
Vol 30 (12) ◽  
pp. 1378-1383 ◽  
Author(s):  
Marco Maltoni ◽  
Emanuela Scarpi ◽  
Marta Rosati ◽  
Stefania Derni ◽  
Laura Fabbri ◽  
...  

Purpose Palliative sedation is a clinical procedure aimed at relieving refractory symptoms in patients with advanced cancer. It has been suggested that sedative drugs may shorten life, but few studies exist comparing the survival of sedated and nonsedated patients. We present a systematic review of literature on the clinical practice of palliative sedation to assess the effect, if any, on survival. Methods A systematic review of literature published between January 1980 and December 2010 was performed using MEDLINE and EMBASE databases. Search terms included palliative sedation, terminal sedation, refractory symptoms, cancer, neoplasm, palliative care, terminally ill, end-of-life care, and survival. A manual search of the bibliographies of electronically identified articles was also performed. Results Eleven published articles were identified describing 1,807 consecutive patients in 10 retrospective or prospective nonrandomized studies, 621 (34.4%) of whom were sedated. One case-control study was excluded from prevalence analysis. The most frequent reason for sedation was delirium in the terminal stages of illness (median, 57.1%; range, 13.8% to 91.3%). Benzodiazepines were the most common drug category prescribed. Comparing survival of sedated and nonsedated patients, the sedation approach was not shown to be associated with worse survival. Conclusion Even if there is no direct evidence from randomized clinical trials, palliative sedation, when appropriately indicated and correctly used to relieve unbearable suffering, does not seem to have any detrimental effect on survival of patients with terminal cancer. In this setting, palliative sedation is a medical intervention that must be considered as part of a continuum of palliative care.


2021 ◽  
Vol 9 (20) ◽  
pp. 1-76
Author(s):  
Neil H Chadborn ◽  
Reena Devi ◽  
Christopher Williams ◽  
Kathleen Sartain ◽  
Claire Goodman ◽  
...  

Background Organising health-care services for residents living in care homes is an important area of development in the UK and elsewhere. Medical care is provided by general practitioners in the UK, and the unique arrangement of the NHS means that general practitioners are also gatekeepers to other health services. Despite recent focus on improving health care for residents, there is a lack of knowledge about the role of general practitioners. Objectives First, to review reports of research and quality improvement (or similar change management) in care homes to explore how general practitioners have been involved. Second, to develop programme theories explaining the role of general practitioners in improvement initiatives and outcomes. Design A realist review was selected to address the complexity of integration of general practice and care homes. Setting Care homes for older people in the UK, including residential and nursing homes. Participants The focus of the literature review was the general practitioner, along with care home staff and other members of multidisciplinary teams. Alongside the literature, we interviewed general practitioners and held consultations with a Context Expert Group, including a care home representative. Interventions The primary search did not specify interventions, but captured the range of interventions reported. Secondary searches focused on medication review and end-of-life care because these interventions have described general practitioner involvement. Outcomes We sought to capture processes or indicators of good-quality care. Data sources Sources were academic databases [including MEDLINE, EMBASE™ (Elsevier, Amsterdam, the Netherlands), Cumulative Index to Nursing and Allied Health Literature, PsycInfo® (American Psychological Association, Washington, DC, USA), Web of Science™ (Clarivate Analytics, Philadelphia, PA, USA) and Cochrane Collaboration] and grey literature using Google Scholar (Google Inc., Mountain View, CA, USA). Methods Realist And Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) guidelines were followed, comprising literature scoping, interviews with general practitioners, iterative searches of academic databases and grey literature, and synthesis and development of overarching programme theories. Results Scoping indicated the distinctiveness of the health and care system in UK and, because quality improvement is context dependent, we decided to focus on UK studies because of potential problems in synthesising across diverse systems. Searches identified 73 articles, of which 43 were excluded. To summarise analysis, programme theory 1 was ‘negotiated working with general practitioners’ where other members of the multidisciplinary team led initiatives and general practitioners provided support with the parts of improvement where their skills as primary care doctors were specifically required. Negotiation enabled matching of the diverse ways of working of general practitioners with diverse care home organisations. We found evidence that this could result in improvements in prescribing and end-of-life care for residents. Programme theory 2 included national or regional programmes that included clearly specified roles for general practitioners. This provided clarity of expectation, but the role that general practitioners actually played in delivery was not clear. Limitations One reviewer screened all search results, but two reviewers conducted selection and data extraction steps. Conclusions If local quality improvement initiatives were flexible, then they could be used to negotiate to build a trusting relationship with general practitioners, with evidence from specific examples, and this could improve prescribing and end-of-life care for residents. Larger improvement programmes aimed to define working patterns and build suitable capacity in care homes, but there was little evidence about the extent of local general practitioner involvement. Future work Future work should describe the specific role, capacity and expertise of general practitioners, as well as the diversity of relationships between general practitioners and care homes. Study registration This study is registered as PROSPERO CRD42019137090. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 20. See the NIHR Journals Library website for further project information.


2019 ◽  
Vol 25 (11) ◽  
pp. 552-564 ◽  
Author(s):  
Angela Thavaraj ◽  
Karen Gillett

Aims: We aimed to answer the question: what is the evidence that post-registration palliative care education for nurses improves practice? Background: The 2008 End of Life Care Strategy emphasised the need for a workforce equipped to provide high-quality end-of-life care for patients and their families. As registered nurses are the healthcare professionals spending most time with patients and families at the end of life, associated policy documents stress the importance of educating nurses to equip them with the necessary knowledge and skills to provide effective care. Despite education being a consistent recommendation, the ability of education to influence nursing practice is uncertain. Methods: We undertook a systematic review of literature using Joanna Briggs Institute Methodology for Mixed Methods by searching the Medline, Embase and CINAHL databases between January 2006 and December 2018. Findings: Ten studies met the inclusion criteria, seven contained quantitative data. Six demonstrated improvements in outcome measures, but not all results were statistically significant. Most quantitative data related to self-reported measures of confidence. Six studies contained qualitative findings that were categorised into themes: confidence, practice change, skills and proactivity. Conclusion: Little research exists exploring the impact of post-registration palliative care education for nurses. Existing outcome measures do not clearly demonstrate changes to end-of-life practice. Research is suggested to establish links between self-reported confidence and improvements to practice. Evaluation of the impact on practice should be an integral component of end-of-life education initiatives.


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