Collaboration, coordination and communication as facilitators of transitions for patients with advanced cancer: a scoping review linked to the Pal-Cycles project.

BACKGROUND: Person-centred care is becoming increasingly recognised as an important element of palliative care. The current review syntheses evidence in relation to transitions in advanced cancer patients with palliative care needs. The review focuses on specific elements which will inform the Pal-Cycles programme, for patients with advanced cancer transitioning from hospital care to community care. Elements of transitional models for cancer patients may include, identification of palliative care needs, compassionate communication with the patient and family members, collaborative effort to establish a multi-dimensional treatment plan, review and evaluation of the treatment plan and identification of the end of life phase. METHODS: A scoping review of four databases (MEDLINE, EMBASE, CINAHL, PsycINFO) was conducted to identify peer-reviewed studies published from January 2013 to October, 2022. A further hand-search of references to locate additional relevant studies was also undertaken. Inclusion criteria involved cancer patients transitions of care with a minimum of two of components from those listed above. Studies were excluded if they were literature reviews, if transition of care was related to cancer survivors, involved non-cancer patients, had paediatric population, if the transition implied a change of therapy and or a lack of physical transit to a non-hospital place of care. This review was guided by Arksey and O'Malley's framework and narrative synthesis was used. RESULTS: Out of 5695 records found, 14 records were selected. Transition models identified: increases in palliative care consultations, hospice referrals, reduction in readmission rates and the ability to provide end of life care at home. Transition models highlight emotional and spiritual support for patients and families. No uniform model of transition was apparent, this depends on the healthcare system where it is implemented. CONCLUSIONS: The findings highlight the importance of collaboration, coordination and communication as central mechanisms for transitional model for patients with advanced cancer. This may require careful planning and will need to be tailored to the contexts of each healthcare system.

Report on palliative sedation medication usage: a survey of palliative care experts in Eight European countries.

BACKGROUND: The practice of palliative sedation continues to raise ethical questions among people, which in turn leads to its varied acceptance and practice across regions. As part of the Palliative Sedation European Union (EU) project, the aim of the present study was to determine the perceptions of palliative care experts regarding the practice of palliative sedation in eight European countries (The Netherlands, Belgium, Germany, UK, Italy, Spain, Hungary, and Romania). METHODS: A specifically designed survey, including questions on the most frequently used medications for palliative sedation, their availability per countries and settings, and the barriers and facilitators to the appropriate practice of palliative sedation was sent to expert clinicians involved and knowledgeable in palliative care in the indicated countries. A purposive sampling strategy was used to select at least 18 participating clinicians per consortium country. Descriptive statistical analysis was conducted on the survey data. RESULTS: Of the 208 expert clinicians invited to participate, 124 participants completed the survey. Midazolam was perceived to be the most frequently used benzodiazepine in all eight countries. 86% and 89% of expert clinicians in Germany and Italy, respectively, perceived midazolam was used "almost always", while in Hungary and Romania only about 50% or less of the respondents perceived this. Levomepromazine was the neuroleptic most frequently perceived to be used for palliative sedation in the Netherlands, Spain, Germany, and the United Kingdom. Between 38- 86% of all eight countries´ expert clinicians believed that opioid medications were "almost always" used during palliative sedation. The perceived use of IV hydration and artificial nutrition "almost always" was generally low, while the country where both IV hydration and artificial nutrition were considered to be "very often" given by a third of the expert clinicians, was in Hungary, with 36% and 27%, respectively. CONCLUSIONS: Our study provides insight about the differences in the perceived practice of medication during palliative sedation between eight European countries. In countries where palliative care services have been established longer perceptions regarding medication use during palliative sedation were more in line with the recommended European guidelines than in Central and Eastern European countries like Romania and Hungary.

Understanding barriers and facilitators to palliative and end-of-life care research: a mixed method study of generalist and specialist health, social care, and research professionals.

BACKGROUND: Palliative care provision should be driven by high quality research evidence. However, there are barriers to conducting research. Most research attention focuses on potential patient barriers; staff and organisational issues that affect research involvement are underexplored. The aim of this research is to understand professional and organisational facilitators and barriers to conducting palliative care research. METHODS: A mixed methods study, using an open cross-sectional online survey, followed by working groups using nominal group techniques. Participants were professionals interested in palliative care research, working as generalist/specialist palliative care providers, or palliative care research staff across areas of North West England. Recruitment was via local health organisations, personal networks, and social media in 2022. Data were examined using descriptive statistics and content analysis. RESULTS: Participants (survey n = 293, working groups n = 20) were mainly from clinical settings (71%) with 45% nurses and 45% working more than 10 years in palliative care. 75% were not active in research but 73% indicated a desire to increase research involvement. Key barriers included lack of organisational research culture and capacity (including prioritisation and available time); research knowledge (including skills/expertise and funding opportunities); research infrastructure (including collaborative opportunities across multiple organisations and governance challenges); and patient and public perceptions of research (including vulnerabilities and burdens). Key facilitators included dedicated research staff, and active research groups, collaborations, and networking opportunities. CONCLUSIONS: Professionals working in palliative care are keen to be research active, but lack time, skills, and support to build research capabilities and collaborations. A shift in organisational culture is needed to enhance palliative care research capacity and collaborative opportunities across clinical and research settings.

Cancer experience in metaphors: patients, carers, professionals, students - a scoping review.

The use of metaphors to talk about cancer experiences has attracted much research and debate, especially in the case of military metaphors. However, questions remain about what metaphors are used by different populations for different aspects of the cancer experience. This scoping review aims to answer them.We searched PubMed, PsycINFO, CINAHL, Scopus and Web of Science databases. Eligible sources include peer-reviewed scientific research published in English between 2013 and 2023, investigating patterns of metaphor use from adult populations (age ≥18) for cancer-related topics, such as cancer itself, the general experience of being ill, treatment, and people and relationships.Out of 1929 articles identified, 30 met the criteria, spanning over different populations. While most papers focused on cancer in general, some focused on specific cancer types, such as breast cancer. Both spontaneous and elicited data were collected in ten languages: mostly English (N=12), Swedish (N=3) and Arabic (N=3). The identified metaphors were subsumed under various broad categories, including particularly violence and journey. Other categories include education and non-human animate entity for the cancer itself, confinement and deprivation and cleanliness for the general experience of being ill with cancer, Poison and gardening for cancer treatment, and distance for patients' social relationships.It was found that metaphors help to identify how patients describe experiences of vulnerability and empowerment. To provide patient-centred care, clinicians and researchers should avoid blanket conclusions about helpful or unhelpful metaphors, but consider the ways in which different metaphors are used by different populations in different contexts.

Leadership Core Competencies in Palliative Care-Recommendations from the European Association for Palliative Care: Delphi Study.

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.

Revised European Association for Palliative Care (EAPC) recommended framework on palliative sedation: An international Delphi study.

BACKGROUND: The European Association for Palliative Care (EAPC) acknowledges palliative sedation as an important, broadly accepted intervention for patients with life-limiting disease experiencing refractory symptoms. The EAPC therefore developed 2009 a framework on palliative sedation. A revision was needed due to new evidence from literature, ongoing debate and criticism of methodology, terminology and applicability. AIM: To provide evidence- and consensus-based guidance on palliative sedation for healthcare professionals involved in end-of-life care, for medical associations and health policy decision-makers. DESIGN: Revision between June 2020 and September 2022 of the 2009 framework using a literature update and a Delphi procedure. SETTING: European. PARTICIPANTS: International experts on palliative sedation (identified through literature search and nomination by national palliative care associations) and a European patient organisation. RESULTS: A framework with 42 statements for which high or very high level of consensus was reached. Terminology is defined more precisely with the terms suffering used to encompass distressing physical and psychological symptoms as well as existential suffering and refractory to describe the untreatable (healthcare professionals) and intolerable (patient) nature of the suffering. The principle of proportionality is introduced in the definition of palliative sedation. No specific period of remaining life expectancy is defined, based on the principles of refractoriness of suffering, proportionality and independent decision-making for hydration. Patient autonomy is emphasised. A stepwise pharmacological approach and a guidance on hydration decision-making are provided. CONCLUSIONS: This is the first framework on palliative sedation using a strict consensus methodology. It should serve as comprehensive and soundly developed information for healthcare professionals.

Improving shared decision-making about cancer treatment through design-based data-driven decision-support tools and redesigning care paths: an overview of the 4D PICTURE project.

Background: Patients with cancer often have to make complex decisions about treatment, with the options varying in risk profiles and effects on survival and quality of life. Moreover, inefficient care paths make it hard for patients to participate in shared decision-making. Data-driven decision-support tools have the potential to empower patients, support personalized care, improve health outcomes and promote health equity. However, decision-support tools currently seldom consider quality of life or individual preferences, and their use in clinical practice remains limited, partly because they are not well integrated in patients' care paths. Aim and objectives: The central aim of the 4D PICTURE project is to redesign patients' care paths and develop and integrate evidence-based decision-support tools to improve decision-making processes in cancer care delivery. This article presents an overview of this international, interdisciplinary project. Design methods and analysis: In co-creation with patients and other stakeholders, we will develop data-driven decision-support tools for patients with breast cancer, prostate cancer and melanoma. We will support treatment decisions by using large, high-quality datasets with state-of-the-art prognostic algorithms. We will further develop a conversation tool, the Metaphor Menu, using text mining combined with citizen science techniques and linguistics, incorporating large datasets of patient experiences, values and preferences. We will further develop a promising methodology, MetroMapping, to redesign care paths. We will evaluate MetroMapping and these integrated decision-support tools, and ensure their sustainability using the Nonadoption, Abandonment, Scale-Up, Spread, and Sustainability (NASSS) framework. We will explore the generalizability of MetroMapping and the decision-support tools for other types of cancer and across other EU member states. Ethics: Through an embedded ethics approach, we will address social and ethical issues. Discussion: Improved care paths integrating comprehensive decision-support tools have the potential to empower patients, their significant others and healthcare providers in decision-making and improve outcomes. This project will strengthen health care at the system level by improving its resilience and efficiency.

Improving the cancer patient journey and respecting personal preferences: an overview of the 4D PICTURE project The 4D PICTURE project aims to help cancer patients, their families and healthcare providers better undertstand their options. It supports their treatment and care choices, at each stage of disease, by drawing on large amounts of evidence from different types of European data. The project involves experts from many different specialist areas who are based in nine European countries. The overall aim is to improve the cancer patient journey and ensure personal preferences are respected.

National Palliative Care Strategy in a Conflict Affected Country: A Jordanian Demonstration Project.

CONTEXT: Palliative care (PC) integration is vital, as endorsed by the World Health Organization. Yet, Jordan, a Middle Eastern country with limited resources, faces ongoing challenges despite efforts to improve palliative and home care. Establishing a national PC strategic framework, with government and stakeholder consensus, is essential for ensuring universal access to high-quality palliative care. However, processes for achieving this, particularly in the Middle East, are underreported. OBJECTIVES: This study delineates the process of developing Jordan's National Palliative and Home Care Strategic Framework, reflecting on its five-year impact. Additionally, it identifies barriers to PC progress in Jordan and offers recommendations to stakeholders. METHODS: We conducted a rapid review and analyzed reports, minutes, meetings, and publications. The sequential framework development involved content and situational analysis, expert review, transparent expert consultation, multistage consensus procedures, and high-level advocacy meetings. RESULTS: The National Palliative and Home Care Strategic Framework encompasses six domains: 1) policy, 2) finance, 3) service delivery, 4) opioid access, 5) capacity building, and 6) information, research, monitoring, and evaluation. Government endorsement in April 2018 ignited national engagement, driving policy, service delivery, workforce development, education, training, and research progress. Nonetheless, workforce shortages, limited opioid access, and inadequate funding persist as barriers. CONCLUSION: Jordan's collaborative development of the inaugural National Palliative and Home Care Strategic Framework, endorsed by the government and stakeholders, provides a comprehensive roadmap for PC advancement. While it promises improved services, effective solutions to workforce and opioid access issues are crucial for successful implementation.