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.

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.

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.

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

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.

Core Palliative Care Research Competencies Framework for Palliative Care Clinicians.

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.

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.

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. METHODS: Survey questionnaires were emailed to 150 adult hospices in the UK. Quantitative data were analysed using SPSS and qualitative data subjected to thematic analysis. FINDINGS: Responding hospices (n=57) provided the following types of support: telephone advice 72% (n=41); care at home 70% (n=40); and rapid response 35% (n=20). There were variations between services regarding referral mechanisms, availability and workforce, and integration with statutory services was limited. CONCLUSION: Variation in the type of provision and delivery of out-of-hours palliative care services alongside limited integration with statutory care have contributed to inequity of access to community-based palliative care, and potentially suboptimal patient and informal caregiver outcomes.

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. Although there is consensus among health care professionals and within guidelines that efficacy of palliative sedation needs to be closely monitored, there is no agreement about how, when, and by whom, this monitoring should be performed. The aim of this study is to evaluate the effects of palliative sedation by measuring the discomfort levels and sedation/agitation levels of the patients at regular timepoints. In addition, the clinical trajectories of those patients receiving palliative sedation will be monitored and recorded. METHODS: The study is an international prospective non-experimental observational multicentre study. Patients are recruited from in-patient palliative care settings in Belgium, Germany, Italy, Spain and the Netherlands. Adult patients with advanced cancer are monitored by using proxy observations of discomfort (DS-DAT) and depth of sedation/agitation levels (RASS-PAL) during palliative sedation. After the palliative sedation period, the care for the specific participant case is evaluated by one of the attending health care professionals and one relative via a questionnaire. DISCUSSION: This study will be the first international prospective multicenter study evaluating the clinical practice of palliative sedation including observations of discomfort levels and levels of sedation. It will provide valuable information about the practice of palliative sedation in European countries in terminally ill cancer patients. Results from this study will facilitate the formulation of recommendations for clinical practice on how to improve monitoring and comfort in patients receiving palliative sedation. TRIAL REGISTRATION: This study is registered at Clinicaltrials.gov since January 22, 2021, registration number: NCT04719702.

Regulations on palliative sedation: an international survey across eight European countries.

BACKGROUND: Palliative sedation is a commonly accepted medical practice. This study aims to clarify how palliative sedation is regulated in various countries and whether this may impact its practice. METHODS: An online survey requesting regulations on palliative sedation was conducted in Belgium, Germany, Hungary, Italy, The Netherlands, Spain, Romania and the UK. Purposive sampling strategy was used to identify clinicians from different medical fields and legal experts for each country. Regulations were analyzed using the principles of the European Association for Palliative Care Framework on palliative sedation. Country reports describing how palliative sedation is regulated were elaborated. RESULTS: One hundred and thirty-nine out of 223 (62%) participants identified 31 laws and other regulations affecting palliative sedation. In Spain, 12 regional laws recognize palliative sedation as a right of the patient at the end of life when there are refractory symptoms. In Italy, the law of informed consent and advance directives specifically recognizes the doctor can use deep sedation when there are refractory symptoms. There are also general medical laws that, while not explicitly referring to palliative sedation, regulate sedation-related principles: the obligation of doctors to honour advance directives, informed consent, the decision-making process and the obligation to document the whole process. In Germany, the Netherlands and the UK, palliative sedation is also regulated through professional guidelines that are binding as good practice with legal significance. CONCLUSIONS: Palliative sedation is considered in the general law of medical practice, in laws regarding the patient's autonomy, and through professional guidelines.

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

The Family Perceptions of Physician-Family Caregiver Communication scale (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. Data were collected in cross-sectional study in Belgium, Finland, Italy, the Netherlands and Poland. The factorial structure was tested in confirmatory factor analysis. Item parameters were obtained using an item response theory model. Participants were 737 relatives of nursing home residents who died up to 3 months prior to the study. In general, the FPPFC scale proved to be a unidimensional and reliable measure of the perceived quality of physician-family communication in nursing home settings in all five countries. Nevertheless, we found unsatisfactory fit to the data with a confirmatory model. An item that referred to advance care planning performed less well in Poland and Italy than in the Northern European countries. In the item analysis, we found that with no loss of reliability and with increased coherency of the item content across countries, the full 7-item version can be shortened to a 4-item version, which may be more appropriate for international studies. Therefore, we recommend use of the brief 4-item FPPFC version by nursing home managers and professionals as an evaluation tool, and by researchers for their studies as these four items confer the same meaning across countries. Supplementary Information: The online version contains supplementary material available at 10.1007/s10433-022-00742-x.

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. 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.

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. METHODS: A national online census survey of managers of adult hospices in the United Kingdom was undertaken. Survey were emailed to managers of adult hospices (n = 150) who provided out-of-hours community palliative care services. Fifteen questions related specifically to the impact of COVID-19. Quantitative data were analysed using descriptive statistics and qualitative data were analysed using descriptive content analysis. RESULTS: Eighty-one responses to the survey were returned (54% response rate); 59 were complete of which 47 contained COVID-19 data. Findings indicated that COVID-19 impacted on out-of-hours community-based palliative care. To meet increased patient need, hospices reconfigured services; redeployed staff; and introduced new policies and procedures to minimize virus transmission. Lack of integration between charitably and state funded palliative care providers was reported. The interconnected issues of the use and availability of Personal Protective Equipment (n = 21) and infection control screening (n = 12) resulted in changes in nursing practices due to fear of contagion for patients, carers and staff. CONCLUSIONS: Survey findings suggest that due to increased demand for community palliative care services, hospices had to rapidly adapt and reconfigure services. Even though this response to the pandemic led to some service improvements, in the main, out-of-hours service reconfiguration resulted in challenges for hospices, including workforce issues, and availability of resources such as Personal Protective Equipment. These challenges were exacerbated by lack of integration with wider healthcare services. More research is required to fully understand the implications of such changes on the quality of care provided.

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. METHOD: A narrative review was conducted using an electronic search in Pubmed, PsychINFO, CINAHL of articles published in English between 2009-2019, using the search terms: 'caregiver/family, caregiver/carer and burden and palliative care/hospice/end of life'. An assessment grid was developed to appraise the clinical use of identified instruments. RESULTS: Of the 568 articles identified, 40 quantitative studies were selected using 31 instruments to measure the caregiver burden of cancer, noncancer and terminally ill patients. Most instruments 23 (74.11%) evaluate the psycho-emotional and, 22 (70.96%) the social domain, 12 instruments (38.7%) focused on the physical domain, three (9.67%) on the spiritual field and six instruments (19.35%) on economic aspects. For the multidimensional instruments, the assessment grid scored highest for the Burden Scale for Family Caregiver (BSFC). CONCLUSION: The BSFC is the tool that seems to meet the most requirements, being potentially the most useful tool 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. To that end, although the final results will be published at the end of the project, this paper aims to increase awareness of the ethical ramifications we had to address in the design and testing of new technologies and to show the essentiality of protection and promotion of privacy, safety and ethical standards. We have thus reached a final design complying with the following principles: (a) respect for the autonomy of participants, especially children, (b) data protection and transparency, (c) fairness and non-discrimination, (d) individual wellbeing of participants in relation to their physical and psychological health status and e) accessibility and acceptability of digital health technologies for better user-engagement. These principles are adapted from the Ethics Guidelines for a trustworthy Artificial Intelligence (AI) which provide the framework for similar interventions to be lawful, complying with all applicable laws and regulations, ethical, ensuring compliance to ethical principles and values and robust, both from a technical and social perspective.

Advance care planning-family carer psychological distress and involvement in decision making: the ACTION trial.

OBJECTIVES: Facilitated advance care planning (ACP) helps family carers' to be aware of patient preferences. It can improve family carers' involvement in decision making and their overall experiences at the end of life, as well as, reduce psychological stress. We investigated the effects of the ACTION Respecting Choices (RC) ACP intervention on the family carers' involvement in decision making in the last 3 months of the patients' life and on the family carers' psychological distress after 3 months of bereavement. METHODS: Over six European countries, a sample of 162 bereaved family carers returned a bereavement questionnaire. Involvement in decision making was measured with a single item of the Views of Informal Carers-Evaluation of Services Short Form questionnaire. Psychological distress was measured with the Impact of Event Scale (IES). RESULTS: No significant effect was found on family carers involvement in decision making in the last 3 months of the patients' life (95% CI 0.449 to 4.097). However, the probability of involvement in decision making was slightly higher in the intervention arm of the study (89.6% vs 86.7%; OR=1.357). Overall, no statistical difference was found between intervention and control group regarding the IES (M=34.1 (1.7) vs 31.8 (1.5); (95% CI -2.2 to 6.8)). CONCLUSION: The ACTION RC ACP intervention showed no significant effect on family carers' involvement in decision making or on subsequent psychological distress. More research is needed about (1) how family carers can be actively involved in ACP-conversations and (2) how to prepare family carers on their role in decision making. TRIAL REGISTRATION NUMBER: International Standard Randomised Controlled Trial Number ISRCTN17231.

Revised recommendations on standards and norms for palliative care in Europe from the European Association for Palliative Care (EAPC): A Delphi study.

BACKGROUND: In 2009, the EAPC published recommendations on standards and norms for palliative care in Europe, and a decade later, wished to update them to reflect contemporary practice. AIM: To elicit consensus on standards and norms for palliative care in Europe, taking account of developments since 2009. DESIGN: A Delphi technique used three sequential online survey rounds, and a final expert consultation (EAPC Board). The original 2009 questionnaire with 134 statements was updated with 13 new concepts and practices following a scoping of the literature between 2009 and 2020 (total: 147 statements). SETTING/PARTICIPANTS: One contact of Boards of 52 national European organisations affiliated to the EAPC were invited to participate, with subsequent rounds sent to respondees. The EAPC Board (n = 13) approved final recommendations. RESULTS: In Round 1: 30 organisations (14 organisations × two people, 16 organisations × one person, total n = 44) in 27 countries responded (response rate 58% organisations, 82% countries), Round 2 (n = 40), Round 3 (n = 38). 119 statements reached consensus in Round 1, 9 in Round 2, 7 in Round 3. In total 135/145 statements in five domains (terminology, philosophy, levels, delivery, services) reached consensus (defined as >75% agreement), (122) were original EAPC recommendations with 13 new recommendations included emerging specialisms: neonatal, geriatric and dementia care, and better care practices. Seven statements failed to reach consensus and four were removed as irrelevant or repetition. CONCLUSIONS: Most recommendations on standards and norms for palliative care in Europe remain unchanged since 2009. Evolving concepts in palliative care can be used to support advocacy.