As this issue celebrates 60 years since the founding of Cruse, it is timely to review Bereavement Care, an important element in the development of the organisation, in the context of other journals with similar aims. The background to the publication of Bereavement Care will be presented together with journals that contain a similar subject coverage. The way the journals are organised will be briefly explored as well as some of their most cited and the most-read papers. Commentary on the latest issue of these journals will be provided along with reflection on other sources of bereavement literature. Some suggestions for future topics are also included.
Patients undergoing cardiothoracic surgery face a small but significant mortality risk. Despite this, end-of-life care specific to this population has received little attention. This article examines current literature on end-of-life care in cardiothoracic surgery and in critical care. Recommendations for management at the end of life are made based on the available evidence.
OBJECTIVES: End-of-life (EOL) situations are common in the intensive care unit (ICU). Poor communication in respective situations may result in conflict and/or post-traumatic stress disorder in patients' next of kin. Thus, training for EOL communication seems pivotal. Primary objective of the current report was to identify approaches for educational programs in the ICU with regard to EOL communication as well as to conclude on implications for future curricula.
MATERIALS AND METHOD: A literature review in MEDLINE, EMBASE, and PsychINFO was performed. A total of 3484 articles published between 2000 until 2016 were assessed for eligibility. Nine articles reporting on education in EOL communication in the ICU were identified and analyzed further.
RESULTS: The duration of EOL workshops ranged from 3 hours to 3 days, with several different educational methods being applied. Mounting data suggest improved comfort, preparedness, and communication performance in EOL providers following specific EOL training. Due to missing data, the effect of EOL training programs on respective patients' next of kin remains unclear.
CONCLUSION: Few scientific investigations focus on EOL communication in intensive care medicine. The available evidence points to increased comfort and EOL communication performance following specific individual EOL training. Given the general importance of EOL communication, we suggest implementation of educational EOL programs. When developing future educational programs, educators should consider previous experience of participants, clearly defined objectives based on institutional needs, and critical care society recommendations to ensure best benefit of all involved parties.
OBJECTIVES: To explore current practice in relation to palliative and end of life care in prisons, and to make recommendations for its future provision.
DESIGN: A rapid literature review of studies using qualitative, quantitative and mixed-methods, with a narrative synthesis of results.
DATA SOURCES: Six databases searched between January 2014 to December 2018: ASSIA, CINAHL, Embase, MEDLINE, National Criminal Justice Reference Service Abstracts and Scopus.
ELIGIBILITY CRITERIA: Primary research articles reporting qualitative or quantitative findings about palliative and end of life care in prisons, published in peer-reviewed, English language journals between January 2014 to December 2018.
PARTICIPANTS: Prisoners, prisoners' families, prison healthcare staff and other prison staff.
DATA EXTRACTION/SYNTHESIS: Data extracted included: citation, design, aim, setting, sample/population, methods and key findings. Data were analysed thematically then subject to a narrative synthesis in order to answer the research questions.
QUALITY APPRAISAL: Two researchers independently appraised articles using the Qualsyst tool, by Kmet et al (2004). Aggregate summary quality scores are included with findings. Articles were not excluded based on quality appraisal.
RESULTS: 23 articles were included (16 qualitative, 6 quantitative, 1 mixed methods). Top three findings (by prevalence) were: fostering relationships with people both inside and outside of prison is important to prisoners with palliative and end of life care needs, inmate hospice volunteers are able to build and maintain close relationships with the prisoners they care for and the conflicting priorities of care and custody can have a negative impact on the delivery of palliative and end of life care in prisons.
CONCLUSIONS: The key findings are: relationships are important to prisoners at the end of life, inmate hospice volunteers can build close bonds with the prisoners in their care and the prison environment and regime conflicts with best practices in palliative and end of life care. Directions for future research are also identified.
CONTEXT: A central approach of palliative care has been to provide holistic care for people who are dying, terminally ill or facing life-limiting illnesses while neither hastening nor postponing death. Assisted dying laws allow eligible individuals to receive medically administered or self-administered medication from a health provider to end their life. The implementation of these laws in a growing number of jurisdictions therefore poses certain challenges for palliative care.
OBJECTIVES: To analyse the research literature about the relationship of assisted dying with palliative care, in countries where it is lawful.
METHODS: A five-stage scoping review process was adapted from the Joanna Briggs Institute. Data sources searched through October 2018 were MEDLINE, CINAHL, PsychINFO, SCOPUS, and ProQuest dissertations and theses, with additional material identified through hand searching. Research studies of any design were included, but editorials or opinion articles were excluded.
RESULTS: After reviewing 5778 references from searches, 105 were subject to full-text review. 16 studies were included: from Belgium (4), Canada (1), Switzerland (2) and the United States (9). We found the relationship between assisted dying and palliative care practices in these locations took varied and sometimes combined forms: supportive, neutral, coexisting, not mutually exclusive, integrated, synergistic, cooperative, collaborative, opposed, ambivalent and conflicted.
CONCLUSION: The studies in this review cast only partial light on challenges faced by palliative care when assisted dying is legal. There is pressing need for more research on the involvement of palliative care in the developing practices of assisted dying, across a growing number of jurisdictions.
BACKGROUND: Q3 conditions are progressive, metabolic, neurological or chromosomal childhood conditions without a cure. Children with these conditions face an unknown lifespan as well as unstable and uncomfortable symptoms. Clinicians and other healthcare professionals are challenged by a lack of evidence for symptom management for these conditions.
AIMS: In this scoping review, we systematically identified and mapped the existing literature on symptom management for children with Q3 conditions. We focused on the most common and distressing symptoms, namely alertness, behavioural problems, bowel incontinence, breathing difficulties, constipation, feeding difficulties, sleep disturbance, temperature regulation, tone and motor problems and urinary incontinence. For children with complex health conditions, good symptom management is pertinent to ensure the highest possible quality of life.
METHODS: Scoping review. Electronic database searches in Ovid MEDLINE, Embase and CINAHL and a comprehensive grey literature search.
RESULTS: We included 292 studies in our final synthesis. The most commonly reported conditions in the studies were Rett syndrome (n=69), followed by Cornelia de Lange syndrome (n=25) and tuberous sclerosis (n=16). Tone and motor problems were the most commonly investigated symptom (n=141), followed by behavioural problems (n=82) and sleep disturbance (n=62).
CONCLUSION: The evidence for symptom management in Q3 conditions is concentrated around a few conditions, and these studies may not be applicable to other conditions. The evidence is dispersed in the literature and difficult to access, which further challenges healthcare providers. More research needs to be done in these conditions to provide high-quality evidence for the care of these children.
CONTEXT: Advances in medicine have seen changes in mortality in Western countries. Simultaneously, countries such as Australia, Canada, USA, New Zealand, the United Kingdom and Germany have encouraged consumer-directed care and Advance Care Plan (ACP) completion, giving patients a voice despite incapacity. Adhering to ACPs relies on the decision-making of treating doctors, making hospital doctors key partners, and their perspectives on ACP adherence critical.
OBJECTIVES: The aim of this review was to explore and map existing research on factors associated with hospital doctors adhering to adult patients' ACPs.
METHODS: A scoping review of English language publications within CINAHL, Emcare, Medline, PsycInfo and Scopus was conducted, following PRISMA Extension for Scoping Reviews (PRISMA-ScR) guidelines. ACPs were defined as adult patient-generated, written health care directions or values statements. Studies of any design, which reported original research associated with hospital doctors adhering to ACPs were included.
RESULTS: Twenty-seven publications were included in the final analysis. Results suggested ACPs were thought potentially useful, however, adherence has been associated with doctors': attributes (e.g. specialty, seniority), attitudes towards ACP (e.g. applicability), and legal knowledge.
CONCLUSION: Current literature suggests doctors' hold largely positive attitudes towards ACPs that provide useful patient information that enables doctors to make appropriate treatment decisions. Doctors often perceive limitations to ACP applicability due to legal requirements or ambiguity of patient outcome goals.
AIMS AND OBJECTIVES: To examine the content and reported psychometric properties of instruments for assessing nurses´ palliative care knowledge and skills in specialised healthcare units.
BACKGROUND: Knowledge of palliative care, and competence in the delivery of care, are essential. Assessment of competence is an important means of evaluating the knowledge and skills of practitioners in order to improve the quality of care provided for patients and their families.
DESIGN: An integrative review.
METHODS: A systematic literature search was conducted in November 2018 in five databases: CINAHL, PubMed (Medline), Cochrane, Scopus and Web of Science. The quality assessment was conducted using the Joanna Briggs Institute´s (JBI) Checklist for Analytical Cross-Sectional Studies. The data was analysed using content analysis. PRISMA guidelines were followed to ensure explicit reporting.
RESULTS: Overall, 5,413 studies were identified and 23 met the inclusion criteria. Nurses' knowledge and skills, as assessed by the instruments, were: 1) care for the patient, 2) care for the patient´s family and 3) professional requirements. Ten instruments were identified assessing nurses' knowledge and skills through knowledge tests and skill-evaluation self-tests. The psychometric properties of the instruments were reported to varying degrees, mainly focusing on internal consistency and content validation.
CONCLUSIONS: Nurses´ knowledge and skills were seen to contribute to the holistic care of the patient and his or her family, and the possession of adequate information and skills is essential when dealing with death and dying. The instruments are commonly available and potentially reliable, although reliability must be determined with caution, so validation studies in other cultures are recommended.
RELEVANCE TO CLINICAL PRACTICE: These results could be utilised to improve the quality of palliative care by evaluating the knowledge and skills of nursing staff, or when considering the needs of palliative care education.
Background: Home care workers (HCWs)-including home health aides, personal care aides, and other direct care workers-provide functional and other essential support that allows older, disabled, and seriously ill people to live at home. As a growing number of patients are aging and dying at home, HCWs are increasingly providing care at the end of life (EOL). Although prior qualitative studies have shown that patient death is an impactful and challenging experience for HCWs, the majority of HCWs receive almost no training on EOL issues.
Objective: The goal of this scoping review is to identify intervention studies describing training of HCWs in EOL issues to map types of training and to assess the degree to which existing efforts address HCW health and well-being.
Design: Our scoping review covered three databases and focused on articles published in English since 2000.
Results: Of the 393 articles screened, 26 underwent full-text review and 6 met inclusion criteria. Only one article discussed training designed for and implemented with HCWs exclusively. Other trainings simultaneously targeted multiple kinds of workers. Supporting HCWs in reducing their stress and improving their coping skills was substantially addressed in only one article, although HCWs' emotional needs were addressed less centrally in several others.
Conclusion: Our findings suggest that there is a paucity of EOL training interventions tailored specifically to the experiences and positioning of HCWs. We recommend that future intervention studies address the multiple facets of HCWs' stress related to patient death to improve EOL care in the home.
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.
PURPOSE OF REVIEW: Family caregivers of patients with cancer often spend a great deal of effort on physically and emotionally demanding work while taking care of patients. However, the majority of caregivers are not properly equipped for their role as caregivers, which may lead to increased distress in both caregivers and patients. Herein, we reviewed the recent literature (last 3 years) examining online interventions that seek to support caregiver resilience and decrease distress.
RECENT FINDINGS: Our search identified interventions involving three main themes: informational support, positive activities, and social support. These are mostly in the form of web-based tools and mobile apps targeting both usability and quality of life. Social network services are also considered in this review as a new environment for caregivers to connect with other individuals with lived experience in similar circumstances.
SUMMARY: Existing studies on online interventions to support caregivers is still at a formative development stage and pilot tests of feasibility, rather than a substantive body of randomized controlled trials to assess the impact in different user populations, or to determine specific factors that impact caregiver distress level or resilience. More research is needed to further assess the long-term effects of online interventions on caregiver stress and resilience. Also, the role of different types of social network services and new forms of interaction, such as conversational agents, has not yet been fully investigated in caregiver populations. Future research should strive to seek new modes of providing services that may present novel opportunities to enhance caregiver resilience and reduce distress.
BACKGROUND: Telehealth is growing and its application in palliative care is seen as a solution to pressures on palliative care services. A 2010 UK review reported growing awareness of telehealth in palliative care but a lack of evidence-based research to support its use. The primary aim of this review was to describe the current use of telehealth in palliative care in the UK and evaluate telehealth initiatives against a digital service standard. The secondary aim was to explore whether telehealth results in a reduction in emergency care access.
METHODS: Systematic review of the literature with thematic synthesis. Records were screened and data extracted by two reviewers. EMBASE, MEDLINE, CINAHL, Psychinfo and Cochrane central register for controlled trials were searched using pre-defined terms. Hand searching of conference literature, thesis databases and citation tracking was also conducted. The protocol for this systematic review was registered with PROSPERO and can be found at http://www.crd.york.ac.uk/PROSPERO/display_record.php?ID=CRD42017080038.
RESULTS: The search identified 3807 titles and 30 studies were included in the review. Telehealth was used to support patients and carers, electronic record keeping and professional education. Notably, the number of home telemonitoring initiatives for patients had increased from the 2010 review. Despite this variety, many studies were small scale, descriptive and provided little evidence of evaluation of the service. Ten papers were sufficiently detailed to allow appraisal against the digital service standard and only one of these met all of the criteria to some extent. Seven studies made reference to emergency care access.
CONCLUSIONS: Although there is growth of telehealth services, there remains a lack of evaluation and robust study design meaning conclusions regarding the clinical application of telehealth in palliative care cannot be drawn. There is insufficient evidence to appreciate any benefit of telehealth on access to emergency care. Future work is needed to evaluate the use of telehealth in palliative care and improve telehealth design in line with digital service standards.
CONTEXT: Individuals with chronic obstructive pulmonary disease (COPD) typically experience a gradual worsening of the illness in the years prior to death. Due to difficulties in predicting the disease trajectory or the timing of acute exacerbations, advance care planning (ACP) may be of particular importance for individuals with COPD.
OBJECTIVES: To review and summarise the available literature on current practices around ACP in COPD.
METHODS: A scoping review of the literature was conducted following the Arksey and O'Malley framework . Original research studies of any design were included.
RESULTS: Twenty-eight studies were included. Across studies, there was agreement that ACP should be incorporated into routine COPD management. There was evidence that this does not occur in everyday practice, with conversations tending to focus on day-to-day symptom management. Barriers included prognosis uncertainty, insufficient time and training, and a lack of protocols for who is responsible for initiating ACP. Facilitators included the use of transition points for identifying the appropriate time to initiate ACP, and an increased focus on ACP in professional education. The occurrence of repeated episodes of acute care was identified as a key transition point for identifying the palliative stage of COPD and an appropriate time to initiate ACP.
CONCLUSION: The findings of this review confirm agreement among healthcare professionals and patients with COPD and their carers that ACP should be incorporated into routine COPD management. The use of transition points may help healthcare professionals overcome the barrier of prognosis uncertainty, and identify patients that might benefit from ACP.
BACKGROUND: Paediatric palliative care (PPC) is an active, total approach to the holistic care of the child and family. Close, long-lasting relationships between healthcare professionals and parents in paediatric palliative care enhance quality, provide emotional support and can influence how parents manage their role in the face of uncertainty.
AIM: To present a narrative literature review of long-term relationships between children's nurses and parents in PPC settings.
METHODS: Six databases (CINAHL, PsycINFO, ASSIA, Scopus, Medline and BNI) were searched, identifying 35 articles. A grey literature search produced seven additional relevant items.
FINDINGS: Four themes were identified: bonds; attachments and trust; sharing the journey; going the extra mile; and boundaries and integrity. All themes revealed an element of tension between closeness and professionalism.
CONCLUSION: Gaining a greater understanding of how closeness and professionalism are successfully managed by children's palliative care nurses could positively influence pre- and post-registration nurse education.
BACKGROUND: In recent decades, issues related to end-of-life care and advance care planning (ACP) have attracted popular attention. Advance care planning has been broadly discussed as one of the potential solutions to protect a patient's rights, autonomy, and dignity at the end of life. To better understand publishing on this topic, we conducted this study to demonstrate the worldwide research productivity, trends, and citations of ACP in the past 3 decades by bibliometric analysis.
METHODS: Articles published on ACP were retrieved from the Web of Science Core Collection database, and the subject terms included "advance directive," or "advance care planning."
RESULTS: Overall, 2126 publications on ACP were retrieved until January 22, 2019. North America, Western Europe, and Australia were the most productive regions. The top 15 countries published 95.9% of the total number of articles. The United States accounted for approximately three-fifths (61.0%) of all publications. When adjusted for population size, Australia had the highest number of articles per million persons (6.64), followed by the Netherlands (6.14) and Belgium (4.61). The most productive authors were Sudore (n = 37), Deliens (n = 29), and Green (n = 24).
CONCLUSIONS: The current study revealed that research in terms of publications on ACP has rapidly increased over the past 3 decades. Developed countries, especially the United States, were more concerned with the ACP research field than developing countries were.
OBJECTIVE: The objective of this review is to summarize current best evidence for advance care planning in older adults with dementia and their families.
INTRODUCTION: Contemporary end of life care cannot be fully achieved without high quality advance care planning practice, which facilitates the expression of patient preferences for treatment if they lose the capacity to decide or communicate their wishes. However, advance care planning for people experiencing dementia can be highly complex and requires additional knowledge and skills. Improving advance care planning for this vulnerable patient group is an urgent matter.
INCLUSION CRITERIA: The review will include systematic reviews of quantitative, qualitative and mixed method studies examining advance care planning for older adults with dementia and their families, published from 2000.
METHODS: Published and unpublished reviews will be identified from searches of the major international databases and relevant databases for gray literature, respectively. Two independent reviewers will conduct screening, critical appraisal and data extraction for included studies. The extracted data will include specific details about the study characteristics (e.g. setting/context, participants, and the intervention/phenomena of interest), quantitative results (including heterogeneity) and qualitative findings relevant to the review. Results of systematic reviews will be presented in tabular format and accompanied by narrative synthesis. Qualitative results will include the overall synthesis of findings. Overlap of original research studies of any design across multiple systematic reviews will be clearly identified.
Palliative care as a foundation for patient-centered care is not adequately covered in nursing curricula. This gap in education means that pediatric oncology nurses may lack necessary palliative care competencies to provide comprehensive care to patients. A literature review was performed to determine if nurses believe that they are prepared to provide clinical palliative care to pediatric patients and how pediatric palliative care best practices can be better integrated into nursing education programs. According to the literature review, studies suggest that providing pediatric palliative care education in nursing programs can build nurses' confidence and better prepare them to competently care for patients and families.
CONTEXT: Patients with severe burns may face distressing symptoms with a high risk of mortality as a result of their injury. The role of palliative care in burns management remains unclear.
OBJECTIVE: To appraise the literature on the role of palliative care in burns management.
METHODS: Scoping review with searches in twelve databases from their inception to August 2019. The citation retrieval and retention are reported in a PRISMA statement.
FINDINGS: 39 papers comprising of 30 primary studies (26 from high income and 4 from middle income countries), 4 reviews, 2 editorials, 2 guidelines and 1 expert board review document were retained in the review. Palliative care is used synonymously with comfort and end of life care in burns literature. Comfort care is mostly initiated when active treatment is withheld (early deaths) or withdrawn (late deaths), limiting its overall benefits to burn patients, their families and health care professionals. Futility decisions are usually complex and challenging, particularly for patients in the late death category and it is unclear if these decisions result in timely commencement of comfort care measures. Two comfort care pathways were identified but it remained unclear how these pathways evaluated 'good death' or supported the family which creates the need for the development of other evidence-based guidelines.
CONCLUSION: Palliative care is applicable in burns management but its current role is mostly confined to the end of life period suggesting that it is not been fully integrated in the management process. Evidence-based guidelines are needed to support the integration and delivery of palliative care in the burn patient population.
Background: People in palliative and end of life care often experience issues relating to feelings of loneliness and feeling unable to connect with and express their emptions. This can lead to poorer outcomes for people, and inhibits person-centred experiences.
Aim: To understand the benefits of poetry therapy for people in palliative and end of life care.
Methods: A narrative review of literature pertinent to the use of poetry with people in palliative and end of life care produced 13 relevant papers, which are presented within this paper.
Results: Within the literature, 4 key themes emerged: (1) The impact of poetry on the wellbeing of people in palliative and end of life care, (2) the impact of poetry on the wellbeing and confidence of health care professionals, (3) the value of poetry for family members preparing for and coping with bereavement, and (4) The value of poetry in facilitating person-centred practices in palliative care.
Conclusions: Poetry therapy can enable a person-centred culture by promoting feelings of well being for people in palliative care, and is also beneficial for health care professionals and family members.
OBJECTIVE: The goal of this scoping review was to identify existing palliative models in long-term care (LTC) homes and differentiate between the key components of each in terms of training/capacity-building strategies; resident, family and staff support; and advance care planning (ACP) and goals-of-care discussions.
METHODS: We conducted a scoping review based on established methods to summarize the international literature on palliative models and programs for LTC. We analyzed the data using tabular summaries and content analysis.
RESULTS: We extracted data from 46 articles related to palliative programs, training/capacity building, family support, ACP and goals of care. Study results highlighted that three key components are needed in a palliative program in LTC: (1) training and capacity building; (2) support for residents, family and staff; and (3) ACP, goals-of-care discussion and informed consent.
CONCLUSION: This scoping review provided important information about key components to be included in a palliative program in LTC. Future work is needed to develop a model that suits the unique characteristics in the Canadian context.