"I couldn't say goodbye": Thematic analysis of interviews with bereaved relatives who lost their loved ones during the COVID-19 pandemic.

Background: Delivering serious news is usually challenging for healthcare professionals and the pandemic of COVID-19 and related restrictions brought additional challenges in this process.

Aims: To explore the experience of bereaved relatives with receiving serious news from healthcare professionals during the pandemic COVID-19.

Design: A qualitative study using thematic analysis and a codebook approach of data collected in semi-structured interviews with bereaved relatives.

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.

Implementation of an Advance Care Planning Intervention in Nursing Homes: An International Multiple Case Study.

Background And Objectives: The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study were to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making, and identify costs and supportive conditions for the implementation of the intervention.

Calling emergency medical services for terminally ill patients: a qualitative study exploring reasons why informal caregivers make the call.

Background: Although emergency medical service is focused on providing acute prehospital treatment, it is often used by terminally ill patients and their informal caregivers during the last days of patient's life. Little is known about why they decide to use the emergency medical services.

Study Objective: The aim was to explore informal caregivers' motivation and decision-making process for calling emergency medical services for their terminally ill loved ones.

Hope and illness expectations: A cross-sectional study in patients with advanced cancer.

Background: The fear of taking away hope hinders clinicians' willingness to share serious news with patients with advanced disease. Unrealistic illness expectations, on the other hand, can complicate decision making and end-of-life care outcomes. Exploration of the association between hope and illness expectations can support clinicians in better communication with their patients.

Innovative communication approaches for initializing pediatric palliative care: perspectives of family caregivers and treating specialists.

Background: Effective cooperation between a pediatric palliative care team (PPCT), primary treating specialists, patients and families is crucial for high quality care of children with complex life-limiting conditions. Several barriers among patients, families and treating specialists have been identified in the context of initializing pediatric palliative care. The aim of the study was to assess the experience with initial pediatric palliative care consultations from perspectives of family caregivers and treating physicians with a special focus on two innovative approaches: attendance of the treating specialist and the opportunity for parents to give feedback on the written report from the consultation.

Factors Influencing Decision Making in Terminal Hospitalization of Nursing Home Residents: A Qualitative Study of the Perspective of Nurses, Social Workers, and General Practitioners.

A significant percentage of nursing home residents die in hospitals. The objective of this study is to explore the factors that influence decision-making about hospitalizations of nursing home residents in the Czech Republic that become terminal. A total of 27 semi-structured interviews with nurses and social workers registered with nursing homes, as well as general practitioners cooperating with nursing homes, were conducted.

The impact of the mySupport advance care planning intervention on family caregivers' perceptions of decision-making and care for nursing home residents with dementia: pretest-posttest study in six countries.

Background: the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care.

Objectives: to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers' uncertainty in decision-making and their satisfaction with care across six countries.

A family carer decision support intervention for people with advanced dementia residing in a nursing home: a study protocol for an international advance care planning intervention (mySupport study).

Background: Where it has been determined that a resident in a nursing home living with dementia loses decisional capacity, nursing home staff must deliver care that is in the person's best interests. Ideally, decisions should be made involving those close to the person, typically a family carer and health and social care providers. The aim of the Family Carer Decisional Support intervention is to inform family carers on end-of-life care options for a person living with advanced dementia and enable them to contribute to advance care planning.

Association between prognostic awareness and quality of life in patients with advanced cancer.

Purpose: Despite the current guidelines supporting open communication about serious news, the evidence about the impact of prognostic awareness on the quality of life in cancer patients is not clear. The aim of this study was to assess the association between quality of life and prognostic awareness in patients with advanced cancer.

Methods: This was a cross-sectional study which involved patients (n = 129) with incurable advanced cancer (estimated by oncologist using 12-month surprise question).

Developing country-specific questions about end-of-life care for nursing home residents with advanced dementia using the nominal group technique with family caregivers.

Objective: We aimed to develop question prompt lists (QPLs) for family caregivers of nursing home residents with advanced dementia in the context of a study involving Canada, the Czech Republic, Italy, the Netherlands, the United Kingdom and Ireland, and to explore cross-national differences. QPLs can encourage family caregivers to ask questions about their relative's end-of-life care.

Methods: We used nominal group methods to create country-specific QPLs.

Views of patients with advanced disease and their relatives on participation in palliative care research.

Background: Patients with advanced disease may not be invited to participate in research based on the assumption that participation would be too burdensome for them. The aim of this study was to explore how patients with advanced disease and their relatives evaluate their experience with research participation.

Method: This study used data from two parts of a larger project.

Approaching the End of Their Lives Under Blue Lights and Sirens - Scoping Review.

Context: Emergency medical services (EMS) are frequently responding to calls involving patients in advanced stages of incurable diseases. Despite the competencies and potential of EMS in supporting patients and their families facing symptoms of advanced progressive illnesses, the role of EMS in providing palliative care remains unclear.

Objective: The following research question was formulated: What is the role of ambulance EMS, EMS dispatch centres, paramedics and emergency medical physicians in the provision of palliative care to terminally ill patients?

Methods: Following PRISMA-ScR guidelines, online bibliographic databases CINAHL Complete, MEDLINE Complete (EBSCO), PubMed and MEDLINE (Ovid) were searched from the initial year of database to September 2019.

Prognostic awareness in advanced cancer patients and their caregivers: A longitudinal cohort study.

Objective: The aim of this study was to analyse longitudinal development of prognostic awareness in advanced cancer patients and their families.

Methods: This was a longitudinal cohort study, involving 134 adult cancer patients, 91 primary family caregivers and 21 treating oncologists. Key eligibility criterion for patients was life expectancy less than 1 year (estimated by their oncologists using the 12-month surprised question).

Optimal participation in decision-making in advanced chronic disease: perspectives of patients, relatives and physicians.

Background: Making decisions about health care issues in advanced illness is difficult and the participation of patients and relatives is essential. Most of the studies on shared decision-making focus on the interaction between patient and physician (dyadic interaction), while the role of relatives in triadic decision-making remains less explored. The aim of the study was to investigate the perceived importance of the role of the patient, the physician and the relative in the decision-making from their respective perspectives.

Important Aspects Influencing Delivery of Serious News in Pediatric Oncology: A Scoping Review.

Delivering serious news presents a major challenge for clinical practice in pediatric oncology due to the complexity of the communication process and a number of aspects that influence how the serious news is delivered and received. This study aims to review and explore the aspects influencing the delivery of serious news in pediatric oncology from the perspective of physicians, parents, siblings and patients themselves. The MEDLINE, Embase, Scopus, Cochrane Library, PsycInfo and Medvik databases were systematically searched for relevant articles published from 1990 to 2017.

Impact of palliative care consult service in inpatient hospital setting: a systematic literature review.

Objectives: Despite a number of studies on effectiveness of palliative care, there is a lack of complex updated review of the impact of in-hospital palliative care consult service. The objective is to update information on the impact of palliative care consult service in inpatient hospital setting.

Methods: This study was a systematic literature review, following the standard protocols (Preferred Reporting Items for Systematic Reviews and Meta-Analyses, Joanna Briggs Institute tools) to ensure the transparent and robust review procedure.

Factors associated with prognostic awareness in patients with cancer: A systematic review.

Objectives: Prognostic awareness relates to patients' capacity to understand their prognosis and the likely illness trajectory. Based on the current evidence, accurate PA is associated with decrease in uncertainty, depresivity, and anxiety and with increase in quality of life. However, other studies found also negative associations of PA and quality of life and mental health.

Psychometric properties of the Czech Integrated Palliative Outcome Scale: reliability and content validity analysis.

Background: Outcome measurement is an essential part of the evaluation of palliative care and the measurements need to be reliable, valid and adapted to the culture in which they are used. The Integrated Palliative Outcome Scale (IPOS) is a widely used tool for assessing personal-level outcomes in palliative care. The aim of this study was to provide Czech version of IPOS and assess its psychometric properties.

Patients' Autonomy at the End of Life: A Critical Review.

Context: The predominating definition of autonomy as a capacity to make an independent rational choice may not be suitable for patients in palliative care. Therefrom arises the actual need for more contextualized perspectives on autonomy to promote the quality of life and satisfaction with care of terminally ill patients.

Objectives: This review aimed to develop a theoretical structural model of autonomy at the end of life based on patients' end-of-life care preferences.

Differences in place of death between lung cancer and COPD patients: a 14-country study using death certificate data.

Unlabelled: Chronic obstructive pulmonary disease and lung cancer are leading causes of death with comparable symptoms at the end of life. Cross-national comparisons of place of death, as an important outcome of terminal care, between people dying from chronic obstructive pulmonary disease and lung cancer have not been studied before. We collected population death certificate data from 14 countries (year: 2008), covering place of death, underlying cause of death, and demographic information.

[Palliative care in Czech Republic in 2016].

In the Czech Republic more than 70,000 patients with chronic incurable diseases need palliative care each year. In 50,000 this need is manageable in the context of general palliative care, 20,000 patients would greatly benefited from specialized palliative care. Most chronically ill patients (> 60 %) died in acute or post acute inpatient health care facilities.

Place of death of children with complex chronic conditions: cross-national study of 11 countries.

Unlabelled: Cross-national understanding of place of death is crucial for health service systems for their provision of efficient and equal access to paediatric palliative care. The objectives of this population-level study were to examine where children with complex chronic conditions (CCC) die and to investigate associations between places of death and sex, cause of death and country. The study used death certificate data of all deceased 1- to 17-year-old children (n = 40,624) who died in 2008, in 11 European and non-European countries.

Estimating the need for palliative care at the population level: A cross-national study in 12 countries.

Background: To implement the appropriate services and develop adequate interventions, detailed estimates of the needs for palliative care in the population are needed.

Aim: To estimate the proportion of decedents potentially in need of palliative care across 12 European and non-European countries.

Design: This is a cross-sectional study using death certificate data.