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Objectives: It is common for relatives to feel uncertain about what to expect at the bedside of a dying loved one. The Centre for the Art of Dying Well together with clinical, academic and communications experts created a ?Deathbed Etiquette? guide offering information and reassurance to relatives. This study explores the views of practitioners with experience in end-of-life care on the guide and how it might be used. Methods: Three online focus groups and nine individual interviews were conducted with a purposive sample of 21 participants involved in end-of-life care. Participants were recruited through hospices and social media. Data were analysed using thematic analysis. Results: Discussions highlighted the importance of effective communication that normalises experiences of being by the bedside of a dying loved one. Tensions around the use of the words ?death? and ?dying? were identified. Most participants also expressed reservations about the title, with the word ?deathbed? found to be old-fashioned and the word ?etiquette? not capturing the varied experiences of being by the bedside. Overall, however, participants agreed that the guide is useful for ?mythbusting? death and dying. Conclusion: There is a need for communication resources that can support practitioners in having honest and compassionate conversations with relatives in end-of-life care. The ?Deathbed Etiquette? guide is a promising resource to support relatives and healthcare practitioners by providing them with suitable information and helpful phrases. More research is needed on how to implement the guide in healthcare settings.

Background: Patients with heart failure have significant palliative care needs, but few are offered palliative care. Understanding the experiences of delivering and receiving palliative care from different perspectives can provide insight into the mechanisms of successful palliative care integration. There is limited research that explores multi-perspective and longitudinal experiences with palliative care provision. This study aimed to explore the longitudinal experiences of patients with heart failure, family carers, and health professionals with palliative care services. Methods: A secondary analysis of 20 qualitative three-month apart interviews with patients with heart failure and family carers recruited from three community palliative care services in the UK. In addition, four group interviews with health professionals from four different services were analysed. Data were analysed using ‘reflexive thematic’ analysis. Results were explored through the lens of Normalisation Process Theory. Results: Four themes were generated: Impact of heart failure, Coping and support, Recognising palliative phase, and Coordination of care. The impact of heart failure on patients and families was evident in several dimensions: physical, psychological, social, and financial. Patients developed different coping strategies and received most support from their families. Although health professionals endeavoured to support the patients and families, this was sometimes lacking. Health professionals found it difficult to recognise the palliative phase and when to initiate palliative care conversations. In turn, patients and family carers asked for better communication, collaboration, and care coordination along the whole disease trajectory. Conclusions: The study provided broad insight into the experiences of patients, family carers, and health professionals with palliative care. It showed the impact of heart failure on patients and their families, how they cope, and how they could be

Background Palliative care is being underutilised in patients with idiopathic pulmonary fibrosis (IPF). Barriers in accessing palliative care (PC) included prognostic uncertainty in IPF, lack of clarity regarding the role of PC and patients fear regarding the future.1 The aim of this review is to explain how PC is currently being utilised in IPF patients.Methods Medline and CINAHL were searched following a sensitive search strategy developed with a faculty librarian. Inclusion criteria included reporting PC utilisation in a health care setting as defined by WHO.2 Results From 245 search results, we included 12 articles. At a national and institutional level we found a PC utilisation of 0%-62% and 13.5%-36% respectively, with PC commencing 1 day – 1 month before death. PC was associated with in home and hospice death. PC utilisation did improve over time. Factors influencing PC utilisation include being older at the time of diagnosis with more severe comorbidities and residing closer to the institution. One cohort study highlighted patients receiving PC had more severe baseline disease which coincided with the centres focus on these measures. Many Cohort studies focused on the idea of a PC referral. Novel Education programmes, MDT approaches and decision aid tools all increased PC utilisation.Conclusion PC utilisation has shown high variability, with onset of care too late to derive maximal benefit, however utilisation has been improving over time. Structured approaches taken by individual centres did improve PC utilisation, however, more research is needed to understand the upward trend in PC utilisation. While some studies focused on the idea of a PC referral, centres should be aware that PC can be delivered by a range of healthcare professionals. Novel models of PC delivery have paved the way forward in increasing PC utilisation, therefore, more research should focus on developing these approaches.ReferencesKim JW, Atkins C, Wilson AM. Barriers to specialist palli

Objectives: It is common for relatives to feel uncertain about what to expect at the bedside of a dying loved one. The Centre for the Art of Dying Well together with clinical, academic and communications experts created a ?Deathbed Etiquette? guide offering information and reassurance to relatives. This study explores the views of practitioners with experience in end-of-life care on the guide and how it might be used. Methods: Three online focus groups and nine individual interviews were conducted with a purposive sample of 21 participants involved in end-of-life care. Participants were recruited through hospices and social media. Data were analysed using thematic analysis. Results: Discussions highlighted the importance of effective communication that normalises experiences of being by the bedside of a dying loved one. Tensions around the use of the words ?death? and ?dying? were identified. Most participants also expressed reservations about the title, with the word ?deathbed? found to be old-fashioned and the word ?etiquette? not capturing the varied experiences of being by the bedside. Overall, however, participants agreed that the guide is useful for ?mythbusting? death and dying. Conclusion: There is a need for communication resources that can support practitioners in having honest and compassionate conversations with relatives in end-of-life care. The ?Deathbed Etiquette? guide is a promising resource to support relatives and healthcare practitioners by providing them with suitable information and helpful phrases. More research is needed on how to implement the guide in healthcare settings.

Background The prevalence of children with life-limiting conditions is set to increase, resulting in an increased number of parents being involved in their child’s treatment decisions. These decisions are influenced by the medical information conveyed and their own evaluations of this knowledge. The aim of this review was to explore the alignment between parental and Healthcare professional (HCP) prognostic perceptions and treatment preferences, whilst presenting possible explanations for any differing opinions.Methods A literature search, using the databases: Medline, Trip, PubMed, PsychINFO and EMBASE was conducted. The inclusion criterion applied was textendash published since 2000, written in English, focused on children of 0textendash18 years. Peer reviewed data on the prognostic perceptions of parents and HCPs, and their goals of treatment for children with life limiting condition were selected.Results Overall, in the eleven papers included there was a lack of parental prognostic understanding with a poor alignment to the prognostic views of HCPs. Parents promoted more aggressive treatment options relative to HCPs more palliative approach. This is hypothesised to result from particularly fathers remaining hopeful for a cure. Studies showed discrepancies remained after prognostic conversations were held between parent’s and HCPs, with others indicating parents’ insight of there being no cure resulted before being openly disclosed by a HCP.Conclusions This study postulates poor prognostic insight may arise from a lack of open communication, resulting in parents advocating for more aggressive treatment with hope of finding a cure. However, given the cross-sectional nature of the studies, this review is only able to suggest these correlations. Future studies are recommended to explore the trajectory of parental prognostic understanding and how it is influenced by communication with HCPs.

Background Refractory angina can have a significant effect on quality of life. Non-invasive interventions have been suggested but there are few guidelines on management. Our aim was to systematically review all studies that reported non-invasive interventions for refractory angina and report on their effectiveness and safety. Methods We performed a literature search of six databases and a grey literature search. Treatments considered first line or second line according to the European Society of Cardiology were excluded, as were interventions that had undergone review within the last 3 years. Design, setting and outcomes were extracted and quality was assessed. A narrative synthesis was undertaken, including an analysis of adverse effects. Results 4476 studies were screened, 14 studies were included in our analysis. Interventions were specialist multidisciplinary programmes, transcutaneous electrical nerve stimulation (TENS), perhexiline, medical optimisation, morphine and intranasal alfentanil. The effects of specialist programmes and perhexiline treatment were mixed. Positive effects were reported with TENS, opioids and medical optimisation, with improvements in symptoms, exercise capacity and quality of life. No major adverse effects were noted in any of the treatments. Conclusion There are non-invasive treatments for refractory angina that are overlooked by current guidelines. While the quality of these studies varies, positive changes have been reported in symptoms, exercise tolerance and quality of life with few adverse effects. There is a need for further research into these treatments which could be useful within the contexts of cardiology and palliative care.

Introduction: Patients with heart failure have significant palliative care needs but few receive palliative care. Guidance is lacking on how to integrate palliative care into standard heart failure care. Palliative care interventions often lack an underpinning theory and understanding of their key components and how they interact to achieve an impact. Understanding how and why an intervention works enhances implementation. Aim: Develop and refine a theory-based, complex palliative care intervention for patients with heart failure and their family carers. Methods: Intervention development using the Medical Research Council framework for developing complex interventions and Theory of Change approach. A systematic review of palliative care needs-assessment and measurement tools in heart failure was conducted. Next, a preliminary intervention and underpinning theory that explains its causal mechanism were co-designed in Theory of Change workshops with stakeholders from a hospital heart failure multidisciplinary team. Subsequently, patient, family carer, and professional caregiver interviews on integrated palliative care were analysed. Findings from the analysis were discussed with stakeholders to refine the intervention and underlying theory and co-develop a feasibility study protocol. Results: NAT:PD-HF was identified as the most appropriate palliative care needs-assessment tool in the review and after discussion with stakeholders. At the Theory of Change workshops, the agreed intervention impact was to meet the holistic palliative care needs of patients and families. Three long-term outcomes were identified: reduced unnecessary hospitalisations, symptom burden, and caregiving burden. To achieve these outcomes, many preconditions, contextual conditions, and intervention activities (education, collaboration, and completing NAT:PD-HF) must exist. Conclusion: The study provided novel insights into complex intervention development and the potential mechanism of integrating

Patients with heart failure have comparable illness burden and palliative care needs to those with cancer. However, few of them are offered timely palliative care. One main barrier is the difficulty in identifying those who require palliative care. Several palliative care needs-assessment/measurement tools were used to help identify these patients and assess/measure their needs, but it is not known which one is the most appropriate for this population. This review aimed to identify the most appropriate palliative care needs-assessment/measurement tools for patients with heart failure. Cochrane Library, MEDLINE Complete, AMED, PsycINFO, CINAHL Complete, EMBASE, EThOS, websites of the identified tools, and references and citations of the included studies were searched from inception to 25 June 2020. Studies were included if they evaluated palliative care needs-assessment/measurement tools for heart failure populations in terms of development, psychometrics, or palliative care patient/needs identification. Twenty-seven papers were included regarding nineteen studies, most of which were quantitative and observational. Six tools were identified and compared according to their content and context of use, development, psychometrics, and clinical applications in identifying patients with palliative care needs. Despite limited evidence, the Needs Assessment Tool: Progressive Disease – Heart Failure (NAT:PD-HF) is the most appropriate palliative care needs-assessment tool for use in heart failure populations. It covers most of the patient needs and has the best psychometric properties and evidence of identification ability and appropriateness. Psychometric testing of the tools in patients with heart failure and evaluating the tools to identify those with palliative care needs require more investigation.44

Background People in the UK are often uncomfortable with supporting the dying. As the population ages we are less likely to have supported a loved one who has died.Methods The Centre for the Art of Dying Well, with palliative care experts and experts by experience, created a resource to support someone at the deathbed of a loved one. This was updated for the COVID-19 pandemic. This abstract describes the wider public engagement with this resource, using content analysis to evaluate public sentiment and understanding of it.Results Release of the original Guide coincided with a report assessing preparedness for supporting someone who is dying, a podcast and a press release. It was widely quoted in the news media with reports in The Times; local and national news (Radio Oxfordshire, Talk Radio, Channel 5 News). Google Analytics demonstrated 7,341 unique visitors to the Guide spending, on average, 2 minutes 2 seconds reading it. The version updated for COVID-19 was widely cited in the Financial Times, the Daily Mail, the Sun and Vatican News and an interview on 5 Live Radio. Based on an analysis of article comments, public sentiment and understanding were shown to be varied including very positive and very negative reactions. There was widespread individual engagement online and offline and also endorsement by organisations such as Marie Curie and Health Improvement Scotland. The Guide for COVID-19 had 2,545 unique page reviews with users spending on average 2 minutes 50 seconds on the page. Analysis of Twitter data demonstrated a wide level of engagement with the content of both guides, and discussions occurring across a diverse range of individuals.Conclusions There has been widespread uptake. Public reception, as evaluated in the content analysis, will guide future research to explore the Guide’s impact.

Background The guide to Deathbed Etiquette was created in 2019 by The Centre for the Art of Dying Well (@artofdyingwell) to support those at the bedside of a loved one who is dying. Updated guidance was developed in 2020 in response to the COVID-19 pandemic. During the COVID19 pandemic, many people (healthcare professionals and lay) have discussed the guide online; however, the nature of these discussions has not been examined. Aims To evaluate the online response to the Deathbed Etiquette guide. Methods We conducted a retrospective 2-year analysis of social media and newspaper comments, which referenced the Deathbed Etiquette guide. We conducted a sentiment analysis of three UK online newspaper comments about the guide. On Twitter, we analysed sentiment and frequency of tweets using the #deathbedetiquette hashtag; we also explored the relationship of this data with tweets from the @Artofdying Twitter account. Results 104 Tweets included the #deathbedetiquette hashtag (with 272 retweets and 432 likes). Three peaks in tweet intensity corresponded with promotional activity from the @Artofdyingwell account. These dates were July 2019 (Deathbed etiquette launch), August 2019 (Attention from Catholic Church and media) and April 2020 (relaunch of COVID19 guide). Sentiment on Twitter was positive with no negative tweets. The newspaper sentiment analysis demonstrated how the public voiced both supportive and negative comments about the guide. For example, some people did not like the term etiquette or the directive structure of the guide. They also disliked what they considered to be the depressing subject matter. Conclusion Online discussion about the Deathbed Etiquette was varied. Our data demonstrates the potential to use social media and online comments to gain understanding about palliative care interventions. Future work can examine the content of these discussions in greater depth and include other social networks, newspapers and digital formats.

Patients with heart failure have comparable illness burden and palliative care needs to those with cancer. However, few of them are offered timely palliative care. One main barrier is the difficulty in identifying those who require palliative care. Several palliative care needs-assessment/measurement tools were used to help identify these patients and assess/measure their needs, but it is not known which one is the most appropriate for this population. This review aimed to identify the most appropriate palliative care needs-assessment/measurement tools for patients with heart failure. Cochrane Library, MEDLINE Complete, AMED, PsycINFO, CINAHL Complete, EMBASE, EThOS, websites of the identified tools, and references and citations of the included studies were searched from inception to 25 June 2020. Studies were included if they evaluated palliative care needs-assessment/measurement tools for heart failure populations in terms of development, psychometrics, or palliative care patient/needs identification. Twenty-seven papers were included regarding nineteen studies, most of which were quantitative and observational. Six tools were identified and compared according to their content and context of use, development, psychometrics, and clinical applications in identifying patients with palliative care needs. Despite limited evidence, the Needs Assessment Tool: Progressive Disease – Heart Failure (NAT:PD-HF) is the most appropriate palliative care needs-assessment tool for use in heart failure populations. It covers most of the patient needs and has the best psychometric properties and evidence of identification ability and appropriateness. Psychometric testing of the tools in patients with heart failure and evaluating the tools to identify those with palliative care needs require more investigation.44

Objective To determine research priorities in advanced heart failure (HF) for patients, carers and healthcare professionals. Methods Priority setting partnership using the systematic James Lind Alliance method for ranking and setting research priorities. An initial open survey of patients, carers and healthcare professionals identified respondents’ questions, which were categorised to produce a list of summary research questions; questions already answered in existing literature were removed. In a second survey of patients, carers and healthcare professionals, respondents ranked the summary research questions in order of priority. The top 25 unanswered research priorities were then considered at a face-to-face workshop using nominal group technique to agree on a ‘top 10’. Results 192 respondents submitted 489 responses each containing one or more research uncertainty. Outof-scope questions (35) were removed, and collating the responses produced 80 summary questions. Questions already answered in the literature (15) were removed. In the second survey, 65 questions were ranked by 128 respondents. The top 10 priorities were developed at a consensus meeting of stakeholders and included a focus on quality of life, psychological support, the impact on carers, role of the charity sector and managing prognostic uncertainty. Ranked priorities by physicians and patients were remarkably divergent. Conclusions Engaging stakeholders in setting research priorities led to a novel set of research questions that might not have otherwise been considered. These priorities can be used by researchers and funders to direct future research towards the areas which matter most to people living with advanced HF.

Background Refractory angina can have a significant effect on quality of life. Non-invasive interventions have been suggested but there are few guidelines on management. Our aim was to systematically review all studies that reported non-invasive interventions for refractory angina and report on their effectiveness and safety. Methods We performed a literature search of six databases and a grey literature search. Treatments considered first line or second line according to the European Society of Cardiology were excluded, as were interventions that had undergone review within the last 3 years. Design, setting and outcomes were extracted and quality was assessed. A narrative synthesis was undertaken, including an analysis of adverse effects. Results 4476 studies were screened, 14 studies were included in our analysis. Interventions were specialist multidisciplinary programmes, transcutaneous electrical nerve stimulation (TENS), perhexiline, medical optimisation, morphine and intranasal alfentanil. The effects of specialist programmes and perhexiline treatment were mixed. Positive effects were reported with TENS, opioids and medical optimisation, with improvements in symptoms, exercise capacity and quality of life. No major adverse effects were noted in any of the treatments. Conclusion There are non-invasive treatments for refractory angina that are overlooked by current guidelines. While the quality of these studies varies, positive changes have been reported in symptoms, exercise tolerance and quality of life with few adverse effects. There is a need for further research into these treatments which could be useful within the contexts of cardiology and palliative care.

Background Heart failure is a serious life limiting condition and patients can have a high symptom burden, reduced quality of life and increased unscheduled hospital admissions. Despite guidance advocating a palliative care approach in advanced heart failure, the variable disease trajectory leads to difficulty in predicting prognosis, which acts as a barrier to considering palliative care for these patients.Aims This systematic review explores which clinically relevant variables are associated with a poor prognosis in heart failure and examines if it is possible to determine which of these variables best predict mortality.Method Databases including conference abstracts and grey literature were searched using pre-defined terms. Screening of title and abstract, followed by full text review against inclusion criteria. Two reviewers extracted data from included studies and assessed Hayden risk of bias. Findings were subjected to narrative synthesis as meta-analysis was not possible.Results 29306 records were screened resulting in 37 included studies. There was a plethora of prognostic variables studied, including demographic, laboratory, electrocardiography, echocardiogram and clinical variables as well as studies that developed models from multiple variables. The primary variables were often only studied once, but even for the few that were investigated more than once, were adjusted for by different covariates and so could not be combined.Conclusions This systematic review failed to find clinically useful prognostic variables to identify patients in the last year of life. Although we identified a variety of proposed prognostic variables, these were explored in a single or in only a few studies, often in restricted populations meaning they cannot be generalised. Identifying good predictors of this phase of life is useful to facilitate advance care planning. Future prognostication research should concentrate on variables measured over time and studying real life populati

Background Malignant bowel obstruction (MBO) is a common presentation in palliative care and can cause challenging symptoms. It has been suggested that the H2-receptor antagonist ranitidine may have a role in the management of MBO as an antisecretory medication to reduce volume of gastrointestinal secretions.Methods A questionnaire was sent via email to all UK adult hospices with inpatient units to investigate how ranitidine is currently being used for patients with MBO. Results 6099 of 165) of eligible hospices completed the questionnaire. 76488, combined with other antisecretory medications (80, as a second or third line antisecretory medication (68 and for gastrointestinal protection (66. Reasons cited for not using ranitidine included a lack of perceived need, lack of evidence, non-inclusion in clinical guidelines and issues of practicality.Responders highlighted the need for an individualised approach to prescribing in MBO with failure of other medications, nature of symptoms and nature of obstruction among factors influencing use of ranitidine.Multiple hospices reported recently starting to use ranitidine or using it more frequently than they had done previously. An Australian randomised controlled trial that used ranitidine as part of a ‘standard’ treatment regime in MBO was a commonly cited instigator for change.Conclusions Ranitidine is being used by the majority of UK hospices for selected adults with MBO despite a limited evidence base. Further research should be encouraged to evaluate the effectiveness of ranitidine and to clarify its role for patients with MBO.