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Background: Understanding the principles and practice of research by health care professionals helps to improve the evidence base for palliative care practice and service delivery. Research is a core competency in palliative care that enables the identification and addressing of problems for patients and their families, establishes best practice and improves ways to manage pain, other symptoms, and concerns. This work was undertaken in the research for all palliative care clinicians (RESPACC) Erasmus+ project. Aim: To identify and develop a set of core research competencies within a structured framework for all members of the multidisciplinary palliative team. Design: A multi-method approach was used including rapid review of literature, Nominal Group Technique, and expert consultation. A quiz to self-assess research competencies outlined within the Framework was produced. Results: The Framework includes 17 competencies organized in 7 domains: The clinical context, Scientific thinking and research design, Ethics and regulatory framework for research, Study and site management, Data management and informatics, Communication and relationships, and Research leadership. In the consultation process 6 of the 17 competencies were considered as required by each individual team member, and 3 to be present within the palliative care team. Conclusion: Using a multi-method approach, the first Palliative Care Research Framework identifying core research competencies for palliative care clinicians has been developed. The aim of the framework was not to transform palliative care clinicians into researchers, but to ensure that clinicians understand the important role of research and its integration into clinical practice. [ABSTRACT FROM AUTHOR]

Background: Leadership competencies are essential for the future development of the field of palliative and hospice care. However, a consensus on the core competencies of good leadership is not yet available. Objective: To elicit consensus on core leadership competencies in palliative care. Design: Based on a literature review, a list of 119 specific leadership competencies was compiled. Subsequently, a Delphi technique used three online survey rounds and a final expert consultation (the board of the European Association for Palliative Care [EAPC]) to assess the importance of these competencies. Setting/Participants: International experts in leadership in palliative care were identified from an online search and EAPC networks. Results: From the 194 international multiprofessional experts invited to participate, 99/78/64 took part in the 3 rounds. One hundred fifteen items from eight domains of leadership (research, advocacy and media, communication, teamwork, project management, organizational learning and sustainability, leading change, and personal traits) reached consensus and were deemed as important. Conclusions: The eight domains provide evidence for teaching of leadership competencies in palliative care. We recommend that exploring, identifying, and integrating leadership competencies in palliative care are given more attention in educational curricula and in training interventions. [ABSTRACT FROM AUTHOR]

Background: Digital health interventions are becoming increasingly important for adults, children, and young people with cancer and palliative care needs, but there is little research to guide policy and practice. Objectives: To identify recommendations for policy development of digital health interventions in cancer and palliative care. Design: Expert elicitation workshop. Setting: European clinical (cancer and palliative care, adult and pediatric), policy, technical, and research experts attended a one-day workshop in London, England, in October 2022, along with MyPal research consortium members. Methods: As part of the European Commission-funded MyPal project, we elicited experts' views on global, national, and institutional policies within structured facilitated groups, and conducted qualitative analysis on these discussions. Results/Implementation: Thirty-two experts from eight countries attended. Key policy drivers and levers in digital health were highlighted. Global level: global technology regulation, definitions, access to information technology, standardizing citizens' rights and data safety, digital infrastructure and implementation guidance, and incorporation of technology into existing health systems. National level: country-specific policy, compatibility of health apps, access to digital infrastructure including vulnerable groups and settings, development of guidelines, and promoting digital literacy. Institutional level: undertaking a needs assessment of service users and clinicians, identifying best practice guidelines, providing education and training for clinicians on digital health and safe digital data sharing, implementing plans to minimize barriers to accessing digital health care, minimizing bureaucracy, and providing technical support. Conclusions: Developers and regulators of digital health interventions may find the identified recommendations useful in guiding policy making and future research initiatives. MyPal child study Clinical Trial Registration NCT04381221; MyPal adult study Clinical Trial Registration NCT04370457 [ABSTRACT FROM AUTHOR]

In 2009, the European Association for Palliative Care (EAPC) developed a framework on palliative sedation, acknowledging this practice as an important and ethically acceptable intervention of last resort for terminally ill patients experiencing refractory symptoms. Before and after that, other guidelines on palliative sedation have been developed in Europe with variations in terminology and concepts. As part of the Palliative Sedation project (Horizon 2020 Funding No. 825700), a revision of the EAPC framework is planned. The aim of this article is to analyze the most frequently used palliative sedation guidelines as reported by experts from eight European countries to inform the discussion of the new framework. The three most reported documents per country were identified through an online survey among 124 clinical experts in December 2019. Those meeting guideline criteria were selected. Their content was assessed against the EAPC framework on palliative sedation. The quality of their methodology was evaluated with the Appraisal Guideline Research and Evaluation (AGREE) II instrument. Nine guidelines were included. All recognize palliative sedation as a last-resort treatment for refractory symptoms, but the criterion of refractoriness remains a matter of debate. Most guidelines recognize psychological or existential distress as (part of) an indication and some make specific recommendations for such cases. All agree that the assessment should be multiprofessional, but they diverge on the expertise required by the attending physician/team. Regarding decisions on hydration and nutrition, it is proposed that these should be independent of those for palliative sedation, but there is no clear consensus on the decision-making process. Several weaknesses were highlighted, particularly in areas of rigor of development and applicability. The identified points of debate and methodological weaknesses should be considered in any update or revision of the guidelines analyzed to improve the quality of their content and the applicability of their recommendations. [ABSTRACT FROM AUTHOR]

Background: Nominal group technique (NGT) is a well-established research method for establishing consensus. Owing to the COVID-19 pandemic, research methods need to be adapted to engage with participants online. Objective: To determine the feasibility and acceptability of adapting NGT to an online format. Setting: Palliative care clinicians (n = 31) in Greece, Romania, and Spain. Methods: NGT discussions were used to elicit palliative care clinicians' opinions, and to rank priorities regarding their understanding and needs about clinical research. Preliminary online training of country-based facilitators was followed by content analysis of debriefing reports to capture learning related to the online NGT format. Results/Implementation: Three NGT sessions used online platforms (Zoom/MS Office/Mentimeter) for the meetings. Analysis of the facilitator reports generated three themes: preparation/facilitation/timing; optimizing technology; and interactions. Conclusions: Conducting NGT meetings online is viable and may be advantageous when compared with traditional face-to-face meetings, but requires careful preparation for participants to contribute effectively. [ABSTRACT FROM AUTHOR]

The article discusses the European Pal_Cycles Project and transitions in advanced cancer care, which may be precipitated by changes in settings of care, management of care, or goals of care. Consistent communication with patients and families needs to include invitations to participate in advance care planning conversations and goals-of-care discussions. The outcome of the project can be challenging because of disparities in the development of palliative care across European countries.

Context: Families are known to be involved in assisted dying and their involvement can be influenced by many factors. Objectives: To explore how Swiss families interact with health care professionals and right-to-die associations regarding assisted suicide and their choices around disclosure. Methods: A secondary data analysis on a cross-sectional qualitative interview study conducted in the Italian- and French-speaking parts of Switzerland was conducted. Interviews with 28 bereaved family members were analyzed using framework analysis. Results: Two main themes were identified: (1) Interactions with physicians and right-to-die associations. (2) Choices about disclosing their experiences. In general, families believed that assisted suicide is a private matter, to be pursued mainly outside the medical field and involved physicians only when necessary. Families appeared to deliberately limit interaction with physicians and to be more comfortable interacting with the right-to-die associations. Some participants presumed a clear choice between assisted suicide or palliative care. Disclosing to others the decision, and preparation of assisted suicide emerged to be an important emotional burden for families. Some family members preferred to restrict disclosure before and after assisted suicide, by sometimes not informing other family members until the final days. Conclusions: In Switzerland, there is limited interaction between families and health care professionals concerning assisted suicide decisions, whereas families reported more open interactions with right-to-die associations. It is recommended that the needs of families should be reflected in health policies, taking into consideration the different contexts where assisted dying is permitted. [ABSTRACT FROM AUTHOR]

The article focuses on social isolation and disruption to normal cancer services has caused by the Covid-19 is using digital technologies to collect electronic patient-reported outcomes (ePROs) can improve communication. Topics include the identification of unmet needs or symptoms that may otherwise be under-reported, the use of ePROs encourages the active participation of patients their condition, and the potential of using digital platforms to improve palliative care continues to grow.

The author reflects on the development of international leadership in palliative care and considers challenges and opportunities for establishing sustainable leadership networks. She highlights examples of diversified palliative care that have adapted to sociocultural context including the Jordanian Palliative and Home Care Strategic Framework and the European Association for Palliative Care. She calls for collaboration between international organizations to ensure growth of palliative care.

Background: Access to many controlled medicines is inadequate in a number of European countries. This leads to deficits in the treatment of moderate to severe pain as well as in opioid agonist therapy. Objective: The study objective was to elaborate the reasons for this inadequacy. The work plan of the Access to Opioid Medication in Europe (ATOME) project included two six-country workshops. These workshops comprised a national situational analysis, drafting tailor-made recommendations for improvement and developing action plans for their implementation. Methods: In total, 84 representatives of the national Ministries of Health, national controlled substances authorities, experts representing regulatory and law enforcement authorities, leading health care professionals, and patient representatives from 13 European countries participated in either one of the workshops. The delegates used breakout sessions to identify key common challenges. Content analysis was used for the evaluation of protocols and field notes. Results: A number of challenges to opioid accessibility in the countries was identified in the domains of knowledge and educational, regulatory, legislative, as well as public awareness and training barriers that limit opioid prescription. In addition, short validity of prescriptions and bureaucratic practices resulting in overregulation impeded availablity of some essential medicines. Stigmatization and criminalisation of people who use drugs remained the major impediment to increasing opioid agonist program coverage. Conclusions: The challenges identified during outcomes of the workshops were used as the basis for subsequent dissemination and implementation activities in the ATOME project, and in some countries the workshop proceedings already served as a stepping-stone for the first changes in regulations and legislation. [ABSTRACT FROM AUTHOR]

Background: Worldwide, the demand for specialist palliative care is increasing but funding is limited. The role of volunteers is underresearched, although their contribution reduces costs significantly. Understanding what volunteers do is vital to ensure services develop appropriately to meet the challenges faced by providers of palliative care. Objective: The study's objective is to describe current involvement of volunteers with direct patient/family contact in U.K. specialist palliative care. Design: An online survey was sent to 290 U.K. adult hospices and specialist palliative care services involving volunteers covering service characteristics, involvement and numbers of volunteers, settings in which they are involved, extent of involvement in care services, specific activities undertaken in each setting, and use of professional skills. Results: The survey had a 67% response rate. Volunteers were most commonly involved in day care and bereavement services. They entirely ran some complementary therapy, beauty therapy/hairdressing, and pastoral/faith-based care services, and were involved in a wide range of activities, including sitting with dying patients. Conclusions: This comprehensive survey of volunteer activity in U.K. specialist palliative care provides an up-to-date picture of volunteer involvement in direct contact with patients and their families, such as providing emotional care, and the extent of their involvement in day and bereavement services. Further research could focus on exploring their involvement in bereavement care. [ABSTRACT FROM AUTHOR]

Access to palliative care has been advocated as a human right by international associations, based on the right to the highest attainable standard of physical and mental health. It has been argued that failure to provide palliative care for patients facing severe pain could constitute cruel, inhuman, or degrading treatment. Yet the governments of many countries throughout the world have still not acknowledged a human right to access palliative care for all those who need it. The European Association for Palliative Care (EAPC), the International Association for Hospice and Palliative Care (IAHPC), and Human Rights Watch (HRW) discussed this at the EAPC congress in 2011 and formulated the Lisbon Challenge: Governments must: (1) put in place health policies that address the needs of patients with life-limiting or terminal illnesses; (2) ensure access to essential medicines, including controlled medications, to all who need them; (3) ensure that health care workers receive adequate training on palliative care and pain management at undergraduate levels; and (4) facilitate and promote the implementation of palliative care services as part of available health services. [ABSTRACT FROM AUTHOR]

The quality of life of the person confronting the end stages of their life may be severely compromised without the support of family caregivers. Indeed, most people requiring palliative care would not be able to fulfill their preferences, such as care at home, without significant family caregiver input. As a consequence, health services are mandated to support the family alongside the person diagnosed with a life-threatening illness. In short, palliative care is supposed to be family centred. However, the quality and type of support made available to family caregivers has been questioned. The purpose of this review is to outline a succinct and empirically informed account of family caregiving within the context of palliative care and to propose an agenda for the future. The appraisal is underpinned by several systematic reviews, and other seminal publications from the last decade. [ABSTRACT FROM AUTHOR]

The article provides information on Palliative Sedation Project, led by Doctor Jeroen Hasselaar from Radboud University Medical Centre in Nijmegen, the Netherlands, which aims to examine the concept and practice of proportional palliative sedation for refractory symptoms throughout Europe. Topics discussed include definition of refractory symptoms, and research methods that will be use to investigate the assessment of refractory symptoms and the use of palliative sedation.