48 Junior doctors and end of life care: a systematic review and narrative synthesis

2018 ◽  
Vol 8 (3) ◽  
pp. 378.1-378
Author(s):  
Aamena Bharmal ◽  
Tessa Morgan ◽  
Stephen Barclay
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Empirical Literature ◽  
Junior Doctors ◽  
List Type ◽  
Narrative Synthesis ◽  
Life Care ◽  
Dying Patients

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.

scholarly journals Palliative and end-of-life care and junior doctors': a systematic review and narrative synthesis

2019 ◽  
pp. bmjspcare-2019-001954 ◽  
Author(s):  
Aamena Bharmal ◽  
Tessa Morgan ◽  
Isla Kuhn ◽  
Bee Wee ◽  
Stephen Barclay
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Clinical Skill ◽  
Death And Dying ◽  
Core Competency ◽  
Junior Doctors ◽  
Narrative Synthesis ◽  
Life Care ◽  
Dying Patients ◽  
Education Needs

BackgroundPalliative and end-of-life care is a core competency for doctors and is increasingly recognised as a key clinical skill for junior doctors. There is a growing international movement to embed palliative care education in medical student and junior doctor education. To date there has been no review of the literature concerning the views and experiences of junior doctors delivering this care.AimTo review the published literature between 2000 and 2019 concerning junior doctors’ experience of palliative and end-of-life care.MethodsSystematic literature review and narrative synthesis.ResultsA search of six databases identified 7191 titles; 34 papers met the inclusion criteria, with a further 5 identified from reference searching. Data were extracted into a review-specific extraction sheet and a narrative synthesis undertaken. Three key themes were identified: (1) ‘Significance of death and dying’: all papers found that junior doctors care for many patients approaching the end of life, and this often causes emotional distress and can leave persisting memories for many years afterwards; (2) ‘Thrown in at the deep end’: junior doctors feel unprepared and unsupported in providing palliative and end-of-life care; and (3) ‘Addressing the gaps’: junior doctors often experience a medical culture of disengagement towards dying patients and varying attitudes of senior doctors. Subsequently they have to learn the skills needed through seeking their own opportunities.ConclusionMedical education needs to change in order to better prepare and support junior doctors for their role in caring for dying patients. This education needs to focus on their knowledge, skills and attitudes.

scholarly journals What is the evidence that people with frailty have needs for palliative care at the end of life? A systematic review and narrative synthesis

2019 ◽  
Vol 33 (4) ◽  
pp. 399-414 ◽  
Author(s):  
Daniel Stow ◽  
Gemma Spiers ◽  
Fiona E Matthews ◽  
Barbara Hanratty
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Narrative Synthesis ◽  
Life Care ◽  
Family Needs ◽  
Psychosocial Needs ◽  
Care Needs ◽  
Critical Phases

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.

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
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Home ◽  
Narrative Synthesis ◽  
Life Care ◽  
Common Part ◽  
The Uk ◽  
Hospice Palliative Care

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.

scholarly journals The facilitators and challenges of dying at home with dementia: A narrative synthesis

2018 ◽  
Vol 32 (6) ◽  
pp. 1042-1054 ◽  
Author(s):  
Caroline Mogan ◽  
Mari Lloyd-Williams ◽  
Karen Harrison Dening ◽  
Christopher Dowrick
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Narrative Synthesis ◽  
Life Care ◽  
Eligibility Criteria ◽  
People With Dementia ◽  
Care At Home ◽  
At Home

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.

27 Understanding public attitudes: a crucial component for developing palliative care services

2018 ◽  
Vol 8 (3) ◽  
pp. 370.1-370 ◽  
Author(s):  
Ishrat Islam ◽  
Anthony Byrne ◽  
Annmarie Nelson
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Social Services ◽  
End Of Life Care ◽  
Online Survey ◽  
Public Attitudes ◽  
List Type ◽  
Life Care ◽  
Services Research ◽  
Survey Tool

IntroductionA major challenge in developing new models of palliative care is to identify the current needs of the public patients and carer (Dixon 2015). There is a lack of evidence on people’s attitudes towards end of life care (EoLC) in Wales.AimTo increase understanding of people’s feelings views knowledge and preferences around EoLC.MethodAn online survey was conducted using an electronic survey tool. Descriptive statistics and thematic analysis were used to perform data analysis.Results2210 people (Age: Mean +SD; 55+14 years) participated in the survey 43% of those were members of the general public 29% were patients/carers and 23% were health professionals. 49% of respondents thought that available palliative care was inadequate and 92% believed that end of life care for dying people should have equal priority for the NHS. 95% of respondents thought that expressing preferences around EoLC in advance was important but only 13% had done this in practice and 60% did not know how to plan their EoLC. However the top three needs in EoLC were identified as having a trained carer (84%) access to other professionals (59%) and emergency care (44%). The top three preferences for EoLC were being surrounded by loved ones (62%) maintaining dignity (55%) and a feeling of peace (40%). Just 24% respondents would chose to be at home while receiving EoLC.ConclusionsUnderstanding public attitudes is essential to understanding changing contexts of care. Developing a need-based palliative care model enhances an effective service delivery.Reference. Dixon J, et al. Equity in the provision of palliative care in the UK: Review of evidence2015;pg. 1–145. London: Personal Social Services Research Unit. Available at: https://www.mariecurie.org.uk/globalassets/media/documents/policy/campaigns/equity-palliative-care-uk-report-full-lse.pdf

Palliative care for community patients diagnosed with dementia: a systematic review

2019 ◽  
Vol 24 (12) ◽  
pp. 570-575
Author(s):  
Cathryn Smith ◽  
Gina Newbury
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
Health Professionals ◽  
End Of Life Care ◽  
Good Practice ◽  
Community Setting ◽  
Life Care ◽  
Staff Support ◽  
The Uk

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.

scholarly journals Palliative care for people with dementia living at home: A systematic review of interventions

2019 ◽  
Vol 33 (7) ◽  
pp. 726-742 ◽  
Author(s):  
Rose Miranda ◽  
Frances Bunn ◽  
Jennifer Lynch ◽  
Lieve Van den Block ◽  
Claire Goodman
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
European Association ◽  
Life Care ◽  
High Quality ◽  
People With Dementia ◽  
Care Outcomes ◽  
Facilitators And Barriers

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.

Palliative Sedation in End-of-Life Care and Survival: A Systematic Review

2012 ◽  
Vol 30 (12) ◽  
pp. 1378-1383 ◽  
Author(s):  
Marco Maltoni ◽  
Emanuela Scarpi ◽  
Marta Rosati ◽  
Stefania Derni ◽  
Laura Fabbri ◽  
...  
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Randomized Clinical Trials ◽  
Palliative Sedation ◽  
Life Care ◽  
Review Of Literature ◽  
Refractory Symptoms ◽  
Manual Search

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.

Does post-registration palliative care education for nurses improve practice? A systematic review

2019 ◽  
Vol 25 (11) ◽  
pp. 552-564 ◽  
Author(s):  
Angela Thavaraj ◽  
Karen Gillett
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
Outcome Measures ◽  
End Of Life Care ◽  
Quantitative Data ◽  
Life Care ◽  
Care Education ◽  
Palliative Care Education ◽  
The Impact

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.

scholarly journals The role and response of primary healthcare services in the delivery of palliative care in epidemics and pandemics: A rapid review to inform practice and service delivery during the COVID-19 pandemic

2020 ◽  
Vol 34 (9) ◽  
pp. 1182-1192 ◽  
Author(s):  
Sarah Mitchell ◽  
Victoria Maynard ◽  
Victoria Lyons ◽  
Nicholas Jones ◽  
Clare Gardiner
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Service Delivery ◽  
End Of Life ◽  
Primary Healthcare ◽  
End Of Life Care ◽  
Healthcare Services ◽  
Rapid Review ◽  
Life Care ◽  
Care Providers

Background: The increased number of deaths in the community happening as a result of COVID-19 has caused primary healthcare services to change their traditional service delivery in a short timeframe. Services are quickly adapting to new challenges in the practical delivery of end-of-life care to patients in the community including through virtual consultations and in the provision of timely symptom control. Aim: To synthesise existing evidence related to the delivery of palliative and end-of-life care by primary healthcare professionals in epidemics and pandemics. Design: Rapid systematic review using modified systematic review methods, with narrative synthesis of the evidence. Data sources: Searches were carried out in Medline, Embase, PsychINFO, CINAHL and Web of Science on 7th March 2020. Results: Only five studies met the inclusion criteria, highlighting a striking lack of evidence base for the response of primary healthcare services in palliative care during epidemics and pandemics. All were observational studies. Findings were synthesised using a pandemic response framework according to ‘systems’ (community providers feeling disadvantaged in terms of receiving timely information and protocols), ‘space’ (recognised need for more care in the community), ‘staff’ (training needs and resilience) and ‘stuff’ (other aspects of managing care in pandemics including personal protective equipment, cleaning care settings and access to investigations). Conclusions: As the COVID-19 pandemic progresses, there is an urgent need for research to provide increased understanding of the role of primary care and community nursing services in palliative care, alongside hospices and community specialist palliative care providers.

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