Recruitment, follow-up and survival in an 11-country cohort study of patients at the end of life and their relatives.

Background: Large, international cohort studies generate high-level evidence, but are resource intense. In end-of-life care such studies are scarce. Hence, planning for future studies in terms of data on screening, recruitment, retention and survival remains a challenge.

A core outcome set for best care for the dying person: Results of an international Delphi study and consensus meeting.

Background: Outcome measurement is essential to progress clinical practice and improve patient care.

Aim: To develop a Core Outcome Set for best care for the dying person.

Design: We followed the Core Outcome Measures in Effectiveness Trials (COMET) Initiative guidelines, which involved identifying potential outcomes via a systematic literature review (n = 619 papers) and from participants in the "iLIVE" project (10 countries: 101 patients, 37 family members, 63 clinicians), followed by a two-round Delphi study, and a consensus meeting.

Identifying persistent high-cost patients in the hospital for care management: development and validation of prediction models.

Background: Healthcare use by High-Need High-Cost (HNHC) patients is believed to be modifiable through better coordination of care. To identify patients for care management, a hybrid approach is recommended that combines clinical assessment of need with model-based prediction of cost. Models that predict high healthcare costs persisting over time are relevant but scarce.

Death rituals and quality of life of bereaved relatives during the COVID-19 pandemic: Results of the observational CO-LIVE study.

Grief is a normal reaction after the death of a loved one. Death rituals are an integral part of the mourning processes. Not being able to carry out death rituals can affect relatives' quality of life.

Dealing With Temporality in Patients With Life-Limiting Disease: An International Qualitative Study.

The prospect of death influences people's thoughts about and how they deal with their remaining time. We aimed to understand whether patients with progressive, life-limiting diseases are oriented in the past, present, or future and how they deal with temporality. We conducted 57 in-depth interviews with end-of-life patients in 10 countries using thematic analysis at three levels (i.

'Someone must do it': multiple views on family's role in end-of-life care - an international qualitative study.

Background: Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men.

Recommendations for Deprescribing of Medication in the Last Phase of Life: An International Delphi Study.

Context: Medications may become inappropriate for patients in the last phase of life and may even compromise their quality of life.

Objective: To find consensus on recommendations regarding deprescribing of medications for adult patients with a life expectancy of six months or less.

Methods: Experts working in palliative care or other relevant disciplines were asked to participate in this international Delphi study.

How end-of-life care was limited during the first 18 months of the COVID-19 pandemic: a longitudinal survey study among healthcare providers (the CO-LIVE study).

Background: During the COVID-19 pandemic, the way in which end-of-life care was provided, underwent a lot of changes and therefor different domains of end-of-life care were impacted. The aim of this study is to describe whether health care providers considered end-of-life care (in medical, nursing, psychosocial and spiritual care) limited by the pandemic through the first 18 months of the COVID-19 pandemic, and examine associations with COVID-19 related circumstances of care (e.g.

Potentially Inappropriate End of Life Care and Healthcare Costs in the Last 30 Days of Life in Regions Providing Integrated Palliative Care in the Netherlands: A Registration-based Study.

Introduction: This study aimed to assess the effect of integrated palliative care (IPC) on potentially inappropriate end- of-life care and healthcare-costs in the last 30 days of life in the Netherlands.

Methods: Nationwide health-insurance claims data were used to assess potentially inappropriate end-of-life care (≥2 emergency room visits; ≥2 hospital admissions; >14 days hospitalization; chemotherapy; ICU admission; hospital death) and healthcare-costs in all deceased adults in IPC regions pre- and post- implementation and in those receiving IPC compared to a 1:2 matched control group.

Results: In regions providing IPC deceased adults (n = 37,468) received significantly less potentially inappropriate end-of-life care post-implementation compared to pre-implementation (26.

Failed implementation of a nursing intervention to support family caregivers: An evaluation study using Normalization Process Theory.

Aim: To evaluate the failed implementation of the Carer Support Needs Assessment Tool Intervention for family caregivers in end-of-life care, within a trial context using Normalization Process Theory (NPT).

Design: An evaluation study was conducted to learn lessons from our trial, which was not successful due to the low number of participants. The evaluation study utilized various data sources, including published data from interviews and questionnaires, and unpublished data derived from emails and conversation notes.

Distress among healthcare providers who provided end-of-life care during the COVID-19 pandemic: a longitudinal survey study (the CO-LIVE study).

Introduction: The COVID-19 pandemic had a significant impact on care at the end-of-life due to restrictions and other circumstances such as high workload and uncertainty about the disease. The objective of this study is to describe the degree of various signs experienced by healthcare providers throughout the first 18 months of the pandemic and to assess what provider's characteristics and care circumstances related to COVID-19 are associated with distress.

Methods: A longitudinal survey study among healthcare providers from different healthcare settings who provided end-of-life care during the pandemic's first 18 months.

A Grounded Theory of Interdisciplinary Communication and Collaboration in the Outpatient Setting of the Hospital for Patients with Multiple Long-Term Conditions.

Interdisciplinary communication and collaboration are crucial in the care of people with multiple long-term conditions (MLTCs) yet are often experienced as insufficient. Through the lens of complexity science, this study aims to explain how healthcare professionals (HCPs) adapt to emerging situations in the care of patients with MLTC by examining interdisciplinary communication and collaboration in the outpatient hospital setting. We used the constant comparative method to analyze transcribed data from seven focus groups with twenty-one HCPs to generate a constructivist grounded theory of 'interdisciplinary communication and collaboration in the outpatient setting of the hospital for patients with multiple long-term conditions'.

Experiences with advance care planning in amyotrophic lateral sclerosis: Qualitative longitudinal study with people with amyotrophic lateral sclerosis and their family carers.

Background: It is unclear when people with amyotrophic lateral sclerosis and their family carers think about their future, what they would prefer in terms of care, and how their ideas change over time.

Aim: Understanding experiences with advance care planning of persons with amyotrophic lateral sclerosis and their family carers-and if, when, how, and why these experiences change over time.

Design: A qualitative longitudinal interview study.

Facilitators and barriers of implementing end-of-life care volunteering in a hospital in five European countries: the iLIVE study.

Background: End-of-life (EoL) care volunteers in hospitals are a novel approach to support patients and their close ones. The iLIVE Volunteer Study supported hospital volunteer coordinators from five European countries to design and implement an EoL care volunteer service on general wards in their hospitals. This study aimed to identify and explore barriers and facilitators to the implementation of EoL care volunteer services in the five hospitals.

Relatives' grief at three moments after death of a loved one during COVID-19 pandemic (the CO-LIVE study).

COVID-19 has complicated grieving experiences. Rich qualitative description of these experiences is lacking. We interviewed 10 bereaved relatives (mainly daughters) 2-3 times each: shortly after their relative died in the first wave of COVID-19 pandemic, and after 12 and 18 months (29 interviews in total).

Quality of cancer treatment care before and after a palliative care pathway: bereaved relatives' perspectives.

Objective: Appropriate communication between healthcare providers and patients and their families is an essential part of good (palliative) care. We investigated whether implementation of a standardised palliative care pathway (PCP) facilitated communication, that is, aspects of shared decision-making (SDM), including advance care planning (ACP) conversations and satisfaction with care as experienced by bereaved relatives of patients with advanced cancer.

Methods: We conducted a prospective preintervention and postintervention study in a hospital.

Continuous deep sedation at the end of life: a qualitative interview-study among health care providers on an evolving practice.

Background: Continuous deep sedation (CDS) can be used for patients at the end of life who suffer intolerably from severe symptoms that cannot be relieved otherwise. In the Netherlands, the use of CDS is guided by an national guideline since 2005. The percentage of patients for whom CDS is used increased from 8% of all patients who died in 2005 to 18% in 2015.

Experiences and perceptions of continuous deep sedation: An interview study among Dutch patients and relatives.

Background: The incidence of continuous deep sedation (CDS) has more than doubled over the last decade in The Netherlands, while reasons for this increase are not fully understood. Patients and relatives have an essential role in deciding on CDS. We hypothesize that the increase in CDS practice is related to the changing role of patients and relatives in deciding on CDS.