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Background: End-of-life (EoL) care volunteers in hospitals are a novel approach to support patients and their close ones. The iLIVE Volunteer Study supported hospital volunteer coordinators from five European countries to design and implement an EoL care volunteer service on general wards in their hospitals. This study aimed to identify and explore barriers and facilitators to the implementation of EoL care volunteer services in the five hospitals. Methods: Volunteer coordinators (VCs) from the Netherlands (NL), Norway (NO), Slovenia (SI), Spain (ES) and United Kingdom (UK) participated in a focus group interview and subsequent in-depth one-to-one interviews. A theory-inspired framework based on the five domains of the Consolidated Framework for Implementation Research (CFIR) was used for data collection and analysis. Results from the focus group were depicted in radar charts per hospital. Results: Barriers across all hospitals were the COVID-19 pandemic delaying the implementation process, and the lack of recognition of the added value of EoL care volunteers by hospital staff. Site-specific barriers were struggles with promoting the service in a highly structured setting with many stakeholders (NL), negative views among nurses on hospital volunteering (NL, NO), a lack of support from healthcare professionals and the management (SI, ES), and uncertainty about their role in implementation among VCs (ES). Site-specific facilitators were training of volunteers (NO, SI, NL), involving volunteers in promoting the service (NO), and education and awareness for healthcare professionals about the role and boundaries of volunteers (UK). Conclusion: Establishing a comprehensive EoL care volunteer service for patients in non-specialist palliative care wards involves multiple considerations including training, creating awareness and ensuring management support. Implementation requires involvement of stakeholders in a way that enables medical EoL care and volunteering to co-exist. Further research is needed to explore how trust and equal partnerships between volunteers and professional staff can be built and sustained. Trial registration: NCT04678310. Registered 21/12/2020. [ABSTRACT FROM AUTHOR]

Background: Few hospitals and heart failure (HF) clinics offer concurrent palliative care (PC) together with life-prolonging therapies. To know the prevalence of patients in HF clinics needing PC and useful tools to recognize them are the first steps to extending PC in those settings. However, it is still unknown whether tools commonly used to identify patients with HF needing PC can correctly distinguish them. Two systematic reviews found that the NECesidades PALiativas (NECPAL) tool was one of the two most commonly used tools to asses PC needs in HF patients. Therefore, we assessed 1) the prevalence of PC needs in HF clinics according to the NECPAL tool, and 2) the characteristics of the patients identified as having PC; mainly, their quality of life (QoL), symptom burden, and psychosocial problems. Methods: This cross-sectional study was conducted at two HF clinics in Colombia. We assessed the prevalence of PC in the overall sample and in subgroups according to clinical and demographic variables. We assessed QoL, symptom burden, and psychosocial problems using the 12-Item Short-Form Health Survey (SF-12), the Kansas City Cardiomyopathy Questionnaire (KCCQ) and the Edmonton Symptom Assessment System (ESAS). We compared the results of these tools between patients identified as having PC needs (+NECPAL) and patients identified as not having PC needs (–NECPAL). Results: Among the 178 patients, 78 (44%) had PC needs. The prevalence of PC needs was twice as nigh in patients NYHA III/IV as in patients NYHA I/II and almost twice as high in patients older than 70 years as in patients younger than 70 years. Compared to –NECPAL patients, +NECPAL patients had worse QoL, more severe shortness of breath, tiredness, drowsiness, and pain, and more psychosocial problems. Conclusion: The prevalence of PC needs in outpatient HF clinics is high and is even higher in older patients and in patients at more advanced NYHA stages. Compared to patients identified as not having PC needs, patients identified as having PC needs have worse QoL, more severe symptoms, and greater psychosocial problems. Including a PC provider in the multidisciplinary team of HF clinics may help to assess and cover these needs. [ABSTRACT FROM AUTHOR]

Background: Use of implantable cardioverter defibrillators is increasingly common. As patients approach the end of life, it is appropriate to deactivate the shock function. Aim: To assess the prevalence of implantable cardioverter defibrillator reprogramming to deactivate the shock function at the end of life and the prevalence of advance directives among this population. Design: Following a previously established protocol available in PROSPERO, we performed a narrative synthesis of our findings and used the logit transformation method to perform our quantitative synthesis. Data sources: We searched seven bibliographic databases (Embase, Cochrane Central register of controlled Trials, Medline-Ovid, Web-of-Science, Scopus, PsychInfo, and CINAHL) and additional sources until April 2019. Results: Of the references we identified, 14 were included. We found a pooled prevalence of implantable cardioverter defibrillator reprogramming at the end of life of 28% (95% confidence interval, 22%–36%) with higher reprogramming rates after the recommendations for managing the device at the end of life were published. Among patients with advance directives, the pooled prevalence of advance directives that explicitly mentioned the device was 1% (95% confidence interval, 1%–3%). Conclusions: The prevalence of implantable cardioverter defibrillator reprogramming and advance directives that explicitly mentioned the device was very low. Study data suggested reprogramming decisions were made very late, after the patient experienced multiple shocks. Patient suffering could be ameliorated if physicians and other healthcare professionals adhere to clinical guidelines for the good management of the device at the end of life and include deactivating the shock function in the discussion that leads to the advance directive. [ABSTRACT FROM AUTHOR]

Background: The term "palliative care" (PC) has often been found to have a negative connotation leading some to suggest rebranding and some services to change their name. Perceptions of the PC community about the term remain largely unexplored. Objective: To explore how PC researchers/academics perceive the term is the objective of this study. Design: This is a cross-sectional survey of attendees to the 10th World Research Congress of the EAPC. The questionnaire covered areas of academic activity, including the use of the term. We analyzed data through descriptive and nonparametric statistics and open responses through content analysis. Participants: Academics and researchers in PC were the participants in this study. Results: Of 318 respondents, the majority were women (65%), physicians (48%), and had a postgraduate degree (90%). For 40%, the term hindered the positioning of PC, 28% worried about using the term, and 55% did not discuss these difficulties. We found significant differences between responses and several demographics (e.g., younger age and higher likelihood of worrying about the term). Through open responses, we identified that the term is widely in use, and that its limitations are seen as a cultural by-product, and not as something that a name change would solve. Conclusions: Senior PC academics, researchers, and clinicians have an onus to ensure that colleagues with limited PC experience have the opportunity to discuss and explore the impact of the term on the practice of research. Regarding the term itself, the community's views are conclusive: although using the term will remain a difficult task, the field's identity is in the name. [ABSTRACT FROM AUTHOR]