Joachim Cohen

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

PhD

About

307
Publications
54,891
Reads
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7,767
Citations
Introduction
Prof. Joachim Cohen is a medical sociologist and a professor of the End-of-Life Care Research Group of Ghent University and Vrije Universiteit Brussel. His program of research focuses on end-of-life care and related issues or trends. His research has been awarded with the Kubler Ross Award for Young Researchers and the Young Investigator Award from the European Association of Palliative Care 2010
Additional affiliations
September 2013 - January 2014
Ghent University
Position
  • Professor (Associate)
Description
  • Guest professor to teach the course Sociology of Health and Illness
February 2012 - present
Vrije Universiteit Brussel
Position
  • - Professor ‘A public health approach to palliative and end-of-life care’
March 2011 - present
Vrije Universiteit Brussel
Position
  • Main investigator, scientific coordinator of the 1. FLIECE-project. Flanders Study to Improve End-of-life Care and Evaluation tools.
Description
  • this project consists of 8 separate research studies, 5 of which I am principal investigator or co-investigator
Education
November 2003 - May 2007
Vrije Universiteit Brussel
Field of study
  • Social Health Sciences: Medical-Social Sciences
September 1999 - September 2001
Vrije Universiteit Brussel
Field of study
  • Sociology
September 1997 - July 1999
Vrije Universiteit Brussel
Field of study
  • Political and Social Sciences, option sociology

Publications

Publications (307)
Article
Objectives Family caregivers play a vital role in care for people with serious illness. Reliable population-level information on family caregiving is scarce. We describe the socio-demographic and family caregiving characteristics and experiences of family caregivers of people with serious illness in the adult population. Method We performed a seco...
Article
Background Cancer is the second leading cause of death in almost all Latin American countries. Knowing where people with cancer die and understanding the factors that affect where they die are public health issues, relevant for the development of policies that ensure the provision of adequate end-of-life care in alignment with patients' needs and p...
Article
Objectives To study changes in the peer consultation practice of assessing assisted dying requests and its quality among trained ‘Life End Information Forum’ (LEIF) consultants in Belgium between 2008 and 2019. Methods Cross-sectional surveys conducted in 2008 (N=132) and 2019 (N=527) among all registered LEIF consultants. Results The response ra...
Article
Full-text available
As previous research has paid little attention to environmental factors affecting the practice of continuous deep sedation until death (CDS), we aimed to explore these using physicians’ experiences and perceptions. We performed an interpretative thematic analysis of primary data from a qualitative interview study conducted from February to May 2019...
Article
Full-text available
Background: Little is known about place of death in Latin America, although this data are crucial for health system planning. This study aims to describe place of death and associated factors in Latin America and to identify factors that contribute to inter-country differences in place of death. Methods: We conducted a total population observati...
Article
Objectives: Neonatology has undergone important clinical and legal changes; however, the implications for end-of-life decision-making in seriously ill neonates to date are unknown. Our aim was to examine changes in prevalence and characteristics of end-of-life decisions (ELDs) in neonatology. Methods: We performed a nationwide mortality follow-b...
Article
Full-text available
Background Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient’s values, preferences and goals of care, there are only a few models in paediatric oncology that capture ACP as a process of behaviour change. We aimed to develop and test the acceptability and feasibilit...
Article
Full-text available
Background Individuals receiving palliative care (PC) are generally thought to prefer to receive care and die in their homes, yet little research has assessed the quality of home- and community-based PC. This project developed a set of valid and reliable quality indicators (QIs) that can be generated using data that are already gathered with interR...
Article
Full-text available
Background Proactive conversations about individual preferences between residents, relatives, and staff can support person-centred, value-concordant end-of-life (EOL) care. Nevertheless, prevalence of such conversations is still low in residential care homes (RCHs), often relating to staff’s perceived lack of skills and confidence. Using tools may...
Article
Full-text available
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...
Article
Compassionate Communities are places and environments in which people, networks and institutions actively work together and are empowered to improve the circumstances, health, and well-being of those facing serious illness, death, dying and loss. The study of their development, implementation and evaluation requires an interdisciplinary research ap...
Article
Full-text available
Background: There is growing recognition of a need for community capacity development around serious illness, dying and loss, complementary to strategies focussing on health services. Hitherto, little is known about how and to what extent palliative care services in different countries are adopting these ideas in their practices. Aim: To examine...
Article
Full-text available
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...
Article
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...
Article
Background Mortality and end-of-life decision-making can occur in newborns, especially within the Neonatal Intensive Care Unit. For parents, participating in end-of-life decision-making is taxing. Knowledge is lacking on what support is helpful to parents during decision-making. Aim To identify barriers and facilitators experienced by parents in m...
Article
Background Due to medical advances and an increasingly ageing population, the number of people living with a serious illness is rising. This has major implications for the burden on family members of assisting with care. Support of family caregivers by healthcare professionals is needed to ensure they can provide quality care for people with seriou...
Article
Background: Mortality and end-of-life decision-making can occur in newborns, especially within the Neonatal Intensive Care Unit. For parents, participating in end-of-life decision-making is taxing. Knowledge is lacking on what support is helpful to parents during decision-making. Aim: To identify barriers and facilitators experienced by parents in...
Article
Full-text available
Background Worldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes fo...
Preprint
Full-text available
Background Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient’s values, preferences and goals of care, there are only a few models in paediatric oncology that capture ACP as a process of behaviour change. We aimed to develop and test the acceptability and feasibilit...
Article
Background: In resource-poor countries, including in Latin American and the Caribbean, empirical information about the characteristics and incidence of medical end-of-life decisions (MELDs)-withholding or withdrawing potentially life-prolonging medical treatments-is largely absent. Methods: The aim was to describe the incidence and decision-maki...
Article
Objective This paper assesses the availability and quality of death certificate data in Latin America and the feasibility of using these data to study place of death and associated factors. Methods In this comparative study, we collected examples of current official death certificates and digital data files containing information about all deaths...
Article
Full-text available
Palliative care is a holistic practice using a multidisciplinary approach in addressing multidimensional needs. Although the social aspects surrounding the end-of-life phase suggest a place for social work in it, the profession is often inadequately involved in daily practice. This contrasts strongly with the potential meaningful contributions of s...
Article
Full-text available
Background Most individuals who typically receive palliative care (PC) tend to have cancer and a relatively short prognosis (< 6 months). People with other life-limiting illnesses can also benefit from a palliative care approach. However, little is known about those who receive palliative home care in Ontario, Canada’s largest province. To address...
Article
Negative beliefs and a lack of clarity surrounding the meaning of palliative care have been widely reported as obstacles to its uptake. Information available to the public possibly contributes to this. A descriptive and discourse-theoretical analysis was conducted of information spread online by palliative care policy, advocacy, and practice organi...
Article
Physicians have been subject to increasing external control to improve their medical practice, and scholars have theorized extensively about their opposition to such control. However, little empirical attention has been paid to the views and reasoning that lie behind this opposition. An in-depth understanding is necessary for enhancing the effectiv...
Article
Objective To develop and face-validate population-level indicators for potential appropriateness of end-of-life care, for children with cancer, neurological conditions, and genetic/congenital conditions, to be applied to administrative health data containing medication and treatment variables. Study design Modified RAND/University of California at...
Conference Paper
Background: Residential care homes (RCHs) are increasingly providers of end-of-life (EOL) care, with staff playing a central role in communication about matters related to dying and death. While residents are generally positive to opportunities to discuss thoughts, preferences, and concerns related to the EOL, such conversations remain rare in prac...
Article
Full-text available
Background Research has highlighted the need for evidence-based interventions to improve paediatric advance care planning (pACP) in adolescents with cancer. Although adolescents express the desire and ability to share their values, beliefs and preferences for treatment, there is a lack of structured multicomponent interventions to improve parent-ad...
Article
Background: The use of analgesics and sedatives to alleviate pain and discomfort is common in end-of-life care in neonates and infants. However, to what extent those drugs are used in that context with the specific aim of bringing the infant in a state of continuous deep sedation (CDS) is currently unknown. Methods: We performed a nationwide mor...
Preprint
Full-text available
Background: If EOL care is to be person-centred and value-concordant, proactive conversations about individual preferences between residents, relatives, and staff are required. Nevertheless, the prevalence of conversations about preferences for EOL care is still low in residential care homes (RCHs), often relating to staff’s perceived lack of skill...
Article
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...
Article
Full-text available
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...
Article
Full-text available
Conversations about values for the end-of-life (EoL) between residents, relatives, and staff may allow EoL preparation and enable value-concordant care, but remain rare in residential care home (RCH) practice. In this article, longitudinal qualitative analysis was used to explore changes in staff discussions about EoL conversations throughout works...
Article
Full-text available
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...
Preprint
Full-text available
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...
Article
Background: The attention of healthcare professionals is directed mainly towards the recipients of care and often insufficiently towards family carers. However, an effective collaboration between professionals and family carers is vital to provide quality palliative and end-of-life care. Such collaboration is under-studied in a palliative care con...
Article
Full-text available
Assisted dying practices, which include euthanasia and physician-assisted suicide (PAS), have expanded significantly around the world over the past 20 years. Euthanasia refers to the act of intentionally ending the life of a patient by a health care practitioner through medical means at that patient's explicit request while PAS involves the provisi...
Article
Objectives Most research on starting palliative care focuses on the role of healthcare services and professional carers. However, patients and their family carers may also play a role. Especially opportunities for starting palliative care might exist among family carers. This study focused on family carers by identifying their behaviours and underl...
Article
Objective Volunteers are an important resource in bridging palliative care (PC) services and communities. However, no studies have systematically mapped volunteers’ actual contributions to PC provision and how well they are supported by healthcare services at the volunteer level. Such insights are important to shape and optimise supportive environm...
Article
Full-text available
Background: Palliative and end-of-life care development is hindered by a lack of information about the circumstances surrounding dying in developing and resource-poor countries. Our aims were to develop and obtain face and content validity for a self-administered questionnaire on end-of-life care provision and medical decision-making for use in po...
Article
Objective Communication and patient‐centred care are important determinants for timely initiation of palliative care. Therefore, we aimed to understand and explain the behaviour “starting a conversation about palliative care with a professional carer” from the perspective of people with incurable cancer. Methods A qualitative study using semi‐stru...
Article
Full-text available
Context Empirical information on circumstances of dying from advanced illness in developing countries remain sparse. Evidence indicates that out-of-hospital end-of-life care can have significant benefits like increased satisfaction for the patient and caregivers, and cost-effective for a healthcare system. Services that are aimed to deliver care at...
Article
Full-text available
Children with serious illness suffer from symptoms at the end of life that often fail to be relieved. An overview is required of healthcare interventions improving and decreasing quality of life (QOL) for children with serious illness at the end of life. A systematic review was performed in five databases, January 2000 to July 2018 without language...
Article
Background Valuable information for planning future end-of-life care (EOLC) services and care facilities can be gained by studying trends in place of death (POD). Scarce data exist on the POD in small developing countries. This study aims to examine shifts in the POD of all persons dying between 1999 and 2010 in Trinidad and Tobago, to draw conclus...
Article
Background COPD patients often use many medical resources, such as hospital admissions and medical imaging, inappropriately close to death. Palliative home care (PHC) could beneficially affect his. Aim To study the effect of use and timing of PHC on medical resource use and costs in the last 30 days before death (DBD) for COPD. Methods Retrospect...
Article
Objectives: Dementia is a progressive incurable life-limiting illness. Previous research suggests end-of-life care for people with dementia should have a symptomatic focus with an effort to avoid burdensome interventions that would not improve quality of life. This study aims to assess the appropriateness of end-of-life care in people who died wit...
Article
Volunteers occupy a specific space in the delivery of palliative care (PC), addressing specific aspects of care and providing a link between professional healthcare providers and informal care. Engaging and empowering these volunteers can be an important strategy to deliver more integrated and comprehensive PC. Insights into current actual voluntee...
Conference Paper
Full-text available
Background Previous studies showed that family carers (FCs) who engaged in formal ACP had fewer adverse outcomes in wellbeing compared with FCs who did not. The ACTION trial is the first multicentre randomized controlled trial of ACP in six European countries. This study will report on the effect of ACP on the wellbeing of bereaved FCs. Methods 45...
Conference Paper
Background A family-centered pediatric ACP intervention (FACE) was developed in the US, which demonstrated feasibility, acceptability and safety. The aim of this study is to evaluate the effectiveness of an ACP intervention, adapted from the FACE intervention, for pediatric oncology in Flanders, Belgium. Methods A total of 93 dyads of parents and...
Conference Paper
Background Parents of adolescents with a life-limiting illness have expressed the desire to talk to their children about goals and preferences of care. Recently, a family-centered pediatric advance care planning (ACP) intervention (FACE) was developed in the US, which demonstrated feasibility, acceptability and safety. The aim of this project is to...
Article
Background Moral distress and burnout related to end-of-life decisions in neonates is common in neonatologists and nurses working in neonatal intensive care units. Attention to their emotional burden and psychological support in research is lacking. Aim To evaluate perceived psychological support in relation to end-of-life decisions of neonatologi...
Article
Full-text available
Context: Making end-of-life decisions in neonates involves ethically difficult and distressing dilemmas for healthcare providers. Insight into which factors complicate or facilitate this decision-making process could be a necessary first step in formulating recommendations to aid future practice. Objectives: This study aimed to identify barriers...
Article
Deze gematchte cohortstudie evalueert met behulp van gekoppelde administratieve databanken de impact van palliatieve thuiszorgondersteuning op de kwaliteit van de patiëntenzorg en op de gezondheidszorguitgaven in de laatste twee levensweken. In 2012 overleden in België 107.847 mensen. Op basis van hun individuele kans op gebruik („propensity score”...
Article
Background Some people experience exceptionally severe bereavement grief, and this level of post-death grief could potentially be the result of a low quality dying process. Aims A pilot study was conducted to determine if a relationship exists between perceived death quality and bereavement grief intensity. Methods A questionnaire was developed a...
Article
Background: ALS is an incurable neurodegenerative disorder, with the recommendation that symptom management and palliative care start immediately or soon after diagnosis. However, little is known about healthcare utilization at the end of life in this patient group. Aim: To describe healthcare utilization at the end of life in patients who died...
Article
Full-text available
Background: Seriously ill children suffer from numerous symptoms at the end of their lives, including pain, anxiety, and restricted communication. There are currently no comprehensive overviews of which health interventions have proven benefits and which have proven detrimental effects on the quality of life of children in an end-of-life context....
Article
Objectives To describe and compare euthanasia and physician-assisted suicide (EAS) practice in Flanders, Belgium (BE), the Netherlands (NL) and Switzerland (CH). Methods Mortality follow-back surveys among attending physicians of a random sample of death certificates. Results We studied 349 EAS deaths in BE (4.6% of all deaths), 851 in NL (4.6% o...
Article
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...
Article
Introduction Multiple care organisations, such as home care services, nursing homes and hospitals, are responsible for providing an appropriate response to the palliative care needs of older people admitted into long-term care facilities. Integrated palliative care aims to provide seamless and continuous care. A possible organisational strategy to...
Article
Medical assistance in dying (MAID) was implemented across Canada in June of 2016, after each Canadian province and territory had developed their own MAID processes. Over the first 2 years, just under 300 Alberta citizens received MAID services, a very small proportion (<0.5%) of all 52,000 decedents. An online 2017–2018 survey of Alberta healthcare...
Article
Full-text available
Introduction: Nursing home residents are a vulnerable and frail segment of the population, characterised by their complex and palliative care needs. To ensure an integrated approach to palliative care for this target group, working on a collaborative basis with multiple providers across organisational boundaries is necessary. Considering that coord...
Article
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...