Lieve Van den Block

Vrije Universiteit Brussel | VUB · End-of-Life Care Research Group (ZRL)

Background Uptake of advance care planning in routine nursing home care is low. Through extensive literature review, theoretical development, and stakeholder involvement, we developed the ACP+ intervention. Aims To evaluate the effects of ACP+ on the knowledge and self-efficacy (confidence in own skills) of nursing home care staff concerning advan...

Introduction: Amyotrophic lateral sclerosis (ALS) is an incurable motor neuron degenerative disease that has rapid progression and is associated with cognitive impairment. For people with ALS (pALS) and their family carers, advance care planning (ACP) is beneficial, as it can lead to feelings of control/relief and refusal of unwanted treatments. H...

Background: Broad consensus exists on the relevance of advance care planning in dementia. Although people with young-onset dementia and their family are hypothesized to have distinct needs and preferences in this area, they are hardly ever included in studies. Aim: We aim to explore the experiences with and views on advance care planning of peop...

Background: There is an increasing number of interactive web-based advance care planning (ACP) support tools, which are web-based aids in any format encouraging reflection, communication, and processing of publicly available information, most of which cannot be found in the peer-reviewed literature. Objective: This study aims to conduct a system...

Background New public health approaches to palliative care such as compassionate communities aim to increase capacity in serious illness, death, and loss by involving civic society. Civic engagement has been described in many domains of health; a description of the characteristics, processes, and impact of the initiatives in palliative care is lack...

Background Area-Based Compassionate Communities are community public health interventions which focus on the role of the community in palliative care provision. They apply a set of actions based on the Ottawa Charter for Health Promotion which aims to increase people’s control over their health. Aim To review and compare Area-Based Compassionate C...

Background Home healthcare (HHC) comprises clinical services provided by medical professionals for people living at home with various levels of care needs and health conditions. HHC may reduce care transitions from home to acute hospitals, but its long-term impact on homebound people living with dementia (PLWD) towards end-of-life remains unclear....

Context: Globally, people most often die within hospitals. As such, healthcare providers in hospitals are frequently confronted with dying persons and their bereaved relatives. Objectives: To provide an overview of the current role hospitals take in providing bereavement care. Furthermore, we want to present an operational definition of bereavem...

Background Healthcare professionals and surrogate decision-makers often face the difficult decision of whether to initiate or withhold antibiotics from people with dementia who have developed a life-threatening infection after losing decisional capacity. Methods We conducted a vignette-based survey among 1050 Quebec stakeholders (senior citizens,...

BACKGROUND There is an increasing number of interactive web-based advance care planning (ACP) support tools, which are web-based aids in any format encouraging reflection, communication, and processing of publicly available information, most of which cannot be found in the peer-reviewed literature. OBJECTIVE This study aims to conduct a systematic...

Background Dementia palliative care is increasingly subject of research and practice improvement initiatives. Aim To assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers. Design Combined analysis of eight studies with bereaved family caregivers’ evaluations 2005–2019. Setting/p...

Background: Palliative care is advocated for older people with frailty and multimorbidity in the community. However, how to best deliver it is unclear. Aim: To develop and model an intervention of short-term specialized palliative care that is initiated timely based on complex care needs and integrated with primary care for older people with fra...

Background: Home healthcare (HHC) may reduce acute hospital utilization, but its effect on homebound people living with dementia (PLWD) at end-of-life remains unclear. We aim to describe the impact of HHC on acute healthcare utilization and end-of-life outcomes in PLWD. Methods: Design: A systematic review of quantitative and qualitative studies re...

Objectives To examine the rate and characteristics of hospitalisation in the last month of life and place of death among nursing home residents and to identify related care processes, facility factors and residents’ characteristics. Setting A cross-sectional study (2015) of deceased residents in 322 nursing homes in six European countries. Partic...

Although advance care planning (ACP) is highly relevant for nursing home residents, its uptake in nursing homes is low. To meet the need for context-specific ACP tools to support nursing home staff in conducting ACP conversations, we developed the ACP+intervention. At its core, we designed three ACP tools to aid care staff in discussing and documen...

Background older people with cancer are at risk of complex and fluctuating health problems, but little is known about the extent to which their well-being changes in the last years of life. Objective to examine changes in physical, psychological and social well-being in the last 5 years of life of older people with cancer. Design prospective coho...

Background While palliative home care is advocated for people with dementia, evidence of its effectiveness is lacking. Aim To evaluate the effects of palliative home care on quality and costs of end-of-life care for older people with dementia. Design Decedent cohort study using linked nationwide administrative databases and propensity score match...

Introduction While the need for palliative care for people living with dementia has widely been recognised, they continue to be a disadvantaged group when it comes to timely initiation, and controversies remain regarding appropriate timing, or what elements constitute high quality palliative care early in the disease trajectory. To date, no literat...

Background: Although a number of quality indicators for palliative care have been implemented worldwide, evidence regarding the performance of palliative care teams is scarce. Aim: Evaluating the quality of palliative care using quality indicators; to describe the variation in quality between palliative care teams; and to suggest quality benchma...

Background ‘PACE Steps to Success’ is a multicomponent training program aiming to integrate generalist and non-disease-specific palliative care in nursing homes. This program did not improve residents’ comfort in the last week of life, but it appeared to improve quality of care and dying in their last month of life. Because this program included on...

Important policy developments in dementia and palliative care in nursing homes between 2010 and 2015 in Flanders, Belgium might have influenced which people die in nursing homes and how they die. We aimed to examine differences between 2010 and 2015 in the prevalence and characteristics of residents with dementia in nursing homes in Flanders, and t...

Introduction There is limited evidence regarding the effectiveness of timely integration of short-term specialised palliative care services for older people in primary care. Using a Theory of Change approach, we developed such an intervention, the Frailty+ intervention. We present the protocol of a pilot randomised controlled trial (RCT) with a pro...

An increasingly frail population in nursing homes accentuates the need for high quality care at the end of life and better access to palliative care in this context. Implementation of palliative care and its outcomes can be monitored by using quality indicators. Therefore, we developed a quality indicator set for palliative care in nursing homes an...

Important policy developments in dementia and palliative care in nursing homes between 2010 and 2015 in Flanders, Belgium might have influenced which people die in nursing homes and how they die. We aimed to examine differences between 2010 and 2015 in the prevalence and characteristics of residents with dementia in nursing homes in Flanders, and t...

An increasingly frail population in nursing homes accentuates the need for high quality care at the end of life and better access to palliative care in this context. Implementation of palliative care and its outcomes can be monitored by using quality indicators. Therefore, we developed a quality indicator set for palliative care in nursing homes an...

Background Palliative care is insufficiently integrated in the continuum of care for older people. It is unclear to what extent healthcare policy for older people includes elements of palliative care and thus supports its integration. Aim (1) To develop a reference framework for identifying palliative care contents in policy documents; (2) to dete...

Background ‘PACE Steps to Success’ is a multicomponent training program aiming to integrate generalist and non-disease-specific palliative care in nursing homes. This program did not improve residents’ comfort in the last week of life, but it appeared to improve quality of care and dying in their last month of life. Because this program included on...

To the Editor We highly commend Mitchell and colleagues¹ for conducting a large-scale pragmatic randomized clinical trial of an advance care planning (ACP) video intervention in 360 nursing homes (Pragmatic Trial of Video Education in Nursing Homes, or PROVEN). The intervention did not reduce hospital transfers over 12 months nor burdensome treatme...

The Interdisciplinary Network for Dementia Using Current Technology, INDUCT, is a Marie Sklodowska Curie funded International Training Network that aims to develop a multi-disciplinary, inter-sectorial educational research framework for Europe to improve technology and care for people with dementia, and to provide the evidence to show how technolog...

Objectives PACE Steps to Success is a 1-year train-the-trainer program aiming to integrate nonspecialist palliative care into nursing homes via staff education and organizational support. In this study, we aimed to explore whether this program resulted in changes in residents' hospital use and place of death. Design Secondary analysis of the PACE...

Providing quality end of life care to older people in the era of COVID-19: Perspectives from five countries - Maria I. Lapid, Raymond Koopmans, Elizabeth L. Sampson, Lieve Van den Block, Carmelle Peisah

Objective To examine trends in end-of-life communication with people with cancer in general practice. Methods Mortality follow-back survey among general practitioners (GPs) in representative epidemiological surveillance networks in Belgium (BE), the Netherlands (NL) and Spain (ES) in 2009–2010 (ES: 2010–2011) and 2013–2014. Using a standardised fo...

Long term care facilities (LTCFs) are increasingly a place of care at end of life in Europe. Longer residence in an LTCF prior to death has been associated with higher indicators of end of life care; however, the relationship has not been fully explored. The purpose of this analysis is to explore associations between length of stay and end of life...

Background/objectives Opioids relieve symptoms in terminal care. We studied opioid underuse in long-term care facilities, defined as residents without opioid prescription despite pain and/or dyspnoea, 3 days prior to death. Design and setting In a proportionally stratified randomly selected sample of long-term care facilities in six European Union...

Background Research requires high-quality ethical and governance scrutiny and approval. However, when research is conducted across different countries, this can cause challenges due to the differing ethico-legal framework requirements of ethical boards. There is no specific guidance for research which does not involve non-medicinal products. Aim T...

Objectives: We aimed to investigate the occurrence rates of clinical events and their associations with comfort in dying nursing home residents with and without dementia. Methods: Epidemiological after-death survey was performed in nationwide representative samples of 322 nursing homes in Belgium, Finland, Italy, the Netherlands, Poland, and Eng...

Objectives This paper aims to investigate resident, facility and country characteristics associated with length of stay in long-term care facilities (LTCFs) across six European countries. Setting Data from a cross-sectional study of deceased residents, conducted in LTCFs in Belgium, England, Finland, Italy, the Netherlands and Poland. Participant...

Context Symptom management is essential in the end of life care of long-term care facility residents. Objectives To study discrepancies and possible associated factors in staff and family carers’ symptom assessment scores for residents in the last week of life. Methods A post mortem survey in Belgium, the Netherlands and Finland: staff and family...

Objectives Advance care planning in young-onset dementia largely remains a blind spot within current literature. This study aimed to explore the engagement in and the conceptualization of advance care planning from the perspective of family caregivers of persons with young-onset dementia and to identify potential similarities and differences in thi...

Background End of life care is often inadequate for people with dementia. Advanced care planning (ACP) has the potential to improve outcomes for people with dementia. The aim of this review is to establish the strength of the evidence and provide decision makers with a clear understanding of what is known about ACP for people living with dementia....

Background The number of older people dying in long-term care facilities is increasing; however, care at the end of life can be suboptimal. Interventions to improve palliative care delivery within these settings have been shown to be effective in improving care, but little is known about their implementation. Aim The aim of this study was to descr...

Objectives The number of older people dying in long-term care facilities (LTCFs) is increasing globally, but care quality may be variable. A framework was developed drawing on empirical research findings from the Palliative Care for Older People (PACE) study and a scoping review of literature on the implementation of palliative care interventions i...

Background: Research has highlighted the need for improving the implementation of advance care planning (ACP) in nursing homes. We developed a theory-based multicomponent ACP intervention (the ACP+ programme) aimed at supporting nursing home staff with the implementation of ACP into routine nursing home care. We describe here the protocol of a clu...

Background: The PACE 'Steps to Success' programme is a complex educational and development intervention for staff to improve palliative care in long-term care facilities (LTCFs). In a cluster randomized controlled trial, this programme has been implemented in 37 LTCFs in 7 European countries. Alongside an effectiveness study, a process evaluation...

Objective: Care homes are a common place of death for older adults, especially those with complex health needs or dementia. Representative, internationally comparable data on care home facilities and their residents is needed to monitor health and wellbeing in this population. Identification and collection of data from care homes can be challengin...

Background: End-of-life care in nursing homes holds several risk factors for the use of physical restraints on residents, a practice shown to be neither safe nor effective. Objectives: To determine the frequency of physical limb and/or trunk restraint use in the last week of life of nursing home residents in six European countries and its associ...

Background Worldwide, every three seconds someone develops dementia. Dementia is a terminal condition. Therefore, communication about future care preferences (advance care planning, ACP) is important for people with dementia (PwD) and their network. This review of reviews aims to synthesize the evidence on ACP for PwD and their carers. Methods Pub...

Importance High-quality evidence on how to improve palliative care in nursing homes is lacking. Objective To investigate the effect of the Palliative Care for Older People (PACE) Steps to Success Program on resident and staff outcomes. Design, Setting, and Participants A cluster-randomized clinical trial (2015-2017) in 78 nursing homes in 7 count...

Background While various initiatives have been taken to improve advance care planning in nursing homes, it is difficult to find enough details about interventions to allow comparison, replication and translation into practice. Objectives We report on the development and description of the ACP+ program, a multi-component theory-based program that a...

Background Many older people with serious chronic illnesses experience complex health problems for which palliative care is indicated. We aimed to examine the quality of primary palliative care for people aged 65–84 years and those 85 years and older who died non-suddenly in three European countries. Methods This is a nationwide representative mor...

Background There is recognition that older people with incurable conditions should have access to specialist palliative care services. However, it remains unclear which activities and outcomes these services entail for older people in primary care and to which patients they are provided. Aim The aim of this review was to identify the criteria for...

Objective: To examine factors associated with perceived quality of communication with physicians by relatives of dying residents of long-term care facilities (LTCFs). Design: A cross-sectional retrospective study in a representative sample of LTCFs conducted in 2015. In each LTCF, deaths of residents during the 3 months before the researcher's v...

Background: By 2030, 30% of the European population will be aged 60 or over and those aged 80 and above will be the fastest growing cohort. An increasing number of people will die at an advanced age with multiple chronic diseases. In Europe at present, between 12 and 38% of the oldest people die in a long-term care facility. The lack of nationally...

Background: In long-term care facilities often many care providers are involved, which could make it difficult to reach consensus in care. This may harm the relation between care providers and can complicate care. This study aimed to describe and compare in six European countries the degree of consensus among everyone involved in care decisions, f...

Background The significance of advance care planning in dementia is widely acknowledged. Despite the suggestion that younger people with dementia and their family might have distinct needs and preferences in this area, studies on advance care planning in young-onset dementia are absent. Aim We aim to explore (1) whether family caregivers had alrea...

Objective: To examine how relatives evaluate the quality of communication with the treating physician of a dying resident in long-term care facilities (LTCFs) and to assess its differences between countries. Design: A cross-sectional retrospective study in a representative sample of LTCFs conducted in 2015. Relatives of residents who died during...

Context: To provide high-quality palliative care to nursing home residents, staff need to understand the basic principles of palliative care. Objectives: To evaluate the extent of agreement with the basic principles of palliative care of nurses and care assistants working in nursing homes in five European countries and to identify correlates. M...

Objectives To evaluate: (1) to what extent family carers of people supported by specialised palliative care services felt they had been provided with information, support and aftercare and (2) how this varied by type of palliative care service, length of enrolment and characteristics of deceased. Methods A cross-sectional postal survey was conduct...

Background End-of-life care practices in long-term care facilities (LTCFs) are the focus of growing attention in Europe, due to rapidly increasing number of older persons living in LTCFs. The knowledge about end-of-life discussions or existence of written advance directives in the European LTCFs is scarce. This study’s aim is to investigate the pre...

Background: The European Association for Palliative Care White Paper defined optimal palliative care in dementia based on evidence and expert consensus. Yet, we know little on how to achieve this for people with dementia living and dying at home. Aims: To examine evidence on home palliative care interventions in dementia, in terms of their effec...

Background: An important part of palliative care is discussing preferences at end of life, however such conversations may not often occur. Care staff with greater self-efficacy towards end-of-life communication are probably more likely to have such discussions, however, there is a lack of research on self-efficacy towards end-of-life discussions am...

Context: The need for increased use and earlier initiation of palliative home care has been advocated by several international organizations. Objectives: To investigate time trends in the use and timing of initiating palliative home care support (PHCS). Methods: We conducted an observational study using routinely collected population-level dat...

Objective The Canadian province of Quebec has recently legalized medical aid in dying (MAID) for competent patients who satisfy strictly defined criteria. The province is considering extending the practice to incompetent patients. We compared the attitudes of four groups of stakeholders toward extending MAID to incompetent patients with dementia....