Decision-making about palliative sedation for patients with cancer: a qualitative study in five European countries linked to the Palliative sedation project.

Background: Palliative sedation refers to the proportional use of titrated medication which reduces consciousness with the aim of relieving refractory suffering related to physical and psychological symptoms and/or existential distress near the end of life. Palliative sedation is intended to be an end of life option that enables healthcare professionals to provide good patient care but there remains controversy on how it is used. Little is known about decision-making processes regarding this procedure.

Why are organisational approvals needed for low-risk staff studies in the UK? Procedures, barriers, and burdens.

Background: Health care staff should be given the opportunity to participate in research, but recruiting clinicians via their employing organisation is not always straightforward or quick in the UK. Unlike many countries outside the UK, very low-risk survey, interview or focus group studies can be subject to some of the same governance approval procedures as interventional studies. An exemplar study carried out by the NIHR funded Palliative Care Research Partnership North West Coast is used to highlight the challenges still faced by researchers and health care organisations when setting up a low-risk staff study across multiple NHS and non-NHS sites.

Identification of core indicators for the integration of a palliative care approach in hospitals: An international Delphi study.

Background: Healthcare providers working in hospitals have significant exposure to patients with palliative care needs. For many patients, these needs often reflect non-specialist rather than specialist palliative care needs. Embedding a palliative care approach in acute hospital-based care however is challenging.

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.

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.

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.

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.

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

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. To elicit consensus on core leadership competencies in palliative care.

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.

Core Palliative Care Research Competencies Framework for Palliative Care Clinicians.

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.

Applying Digital Health in Cancer and Palliative Care in Europe: Policy Recommendations from an International Expert Workshop (MyPal Project).

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. To identify recommendations for policy development of digital health interventions in cancer and palliative care. Expert elicitation workshop.

Out-of-hours community palliative care: a national survey of hospice providers.

Background: Community-based palliative out-of-hours services operate outside normal working hours. However, little is known about the provision and delivery of such care.

Aim: The aim of this study was to describe types of provision and delivery of out-of-hours palliative care services provided by UK hospices.

Monitoring the clinical practice of palliative sedation (PALSED) in patients with advanced cancer: an international, multicentre, non-experimental prospective observational study protocol.

Background: Palliative sedation involves the intentional lowering of consciousness at the end of life. It can be initiated to relieve a patient's burden caused by refractory symptoms at the end of life. The impact of palliative sedation needs to be clinically monitored to adjust the proper dose and regimen of sedative medication to ensure that patients are at ease and comfortable at the end of their lives.

Measuring relatives' perceptions of end-of-life communication with physicians in five countries: a psychometric analysis.

Unlabelled: (FPPFC) was developed to assess quality of physician-family end-of-life communication in nursing homes. However, its validity has been tested only in the USA and the Netherlands. The aim of this paper is to evaluate the FPPFC construct validity and its reliability, as well as the psychometric characteristics of the items comprising the scale.

Review of European Guidelines on Palliative Sedation: A Foundation for the Updating of the European Association for Palliative Care Framework.

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.

The impact of covid-19 on out-of-hours adult hospice care: an online survey.

Background: Globally COVID-19 has had a profound impact on the provision of healthcare, including palliative care. However, there is little evidence about the impact of COVID-19 on delivery of out-of-hours specialist palliative care services in the United Kingdom. The aim of the study is to investigate the impact of the COVID-19 pandemic on the delivery of out-of-hours community-based palliative care services.

Instruments to assess the burden of care for family caregivers of adult palliative care patients.

Background: A primary caregiver shares the illness experience of the patient and undertakes vital care work, alongside managing the patient's emotions, and is actively involved in care process without being paid. When faced with the palliative care patient's needs, caregivers are affected on multiple levels (physical, psychological and socio-economic), thereby experiencing a moderate or severe burden of care.

Aim: To identify assessment instruments for the burden of care for family caregivers that are suitable to be used in clinical practice.

Ethical Principles in Digital Palliative Care for Children: The MyPal Project and Experiences Made in Designing a Trustworthy Approach.

This paper explores the ethical dimension of the opportunity to offer improved electronic patient-reported outcome (ePRO) systems addressing personal needs of pediatric cancer patients, their parents and caregivers, with regard to technological advance of digital health. This opportunity has been explored in the MyPal research project, which aims to assess a patient-centered service for palliative care relying on the adaptation and extension of digital health tools and concepts available from previous projects. Development and implementation of ePROs need to take place in a safe, secure and responsible manner, preventing any possible harm and safeguarding the integrity of humans.