info:eu-repo/grantAgreement/EC/H2020/948609/EU/Choice of where we die: a classification reform to discern diversity in individual end of life pathways

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Project title
info:eu-repo/grantAgreement/EC/H2020/948609/EU/Choice of where we die: a classification reform to discern diversity in individual end of life pathways
Code
info:eu-repo/grantAgreement/EC/H2020/948609/EU/Choice of where we die: a classification reform to discern diversity in individual end of life pathways
Project Coordinator
Organization
 
Status
On going
Start date
01-01-2022
Expected Completion
31-12-2026
 
Co-Investigator(s)

Description

Abstract
All humans die, >60% from a chronic disease. Whenever possible, this should happen where that individual feels it is the right place to be, so they feel empowered and safe. We know that most would prefer dying at home but many die in hospital. To help achieve preferences we must dig deeper. Until now, science has failed to capture the dynamics and diversity of preferences and places where people are cared for at the end of life. Current classifications of dying places are incomplete and inconsistent. We are driven by the vision of reforming the way dying places are classified and understood, refining and shifting the focus from the end-point (place of death) to the pathway that precedes it. We aim to develop a strong foundation for a pioneering international classification tool that maps preferred and actual places towards death grounded on what they mean for individuals (beyond a purely physical or medical view). We will combine classic methods of developing health classifications with a bottom-up participatory research approach, working with patient and family representatives. First, we will conduct an international comparative analysis of existing classifications systems and routinely collected death certificate/registration data on place of death. Alongside, we will conduct a novel mixed-methods study (ethnography followed by longitudinal study) in four countries covering existing target variation (Portugal, Netherlands, Uganda and USA), to explore nuances and commonalities in the experiences of patients with life-threatening conditions and their families. Based on the generated evidence, we will build a contemporary classification of dying places and assess its content validity in focus groups with patients, carers and other stakeholders. We will then test it in varied settings in a psychometric study to examine construct validity, reliability, responsiveness, data quality and interpretability. All data will be integrated to deepen understanding of different end of life pathways in caring environments and what influences them. The project leading to this application has received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (grant agreement No 948609). This is an international study with the collaboration of several institutions: University of Coimbra (UC), NOVA University Lisbon (Nova ENSP), Mulago National Referral Hospital (MNRH), Leiden University Medical Center (LUMC), Brown University (BU) and Kansas University Medical Center (KUMC). More information here: http://www.eolinplace.com
 

Publications
(All)

Results 1-5 of 5 (Search time: 0.002 seconds).

Issue DateTitleAuthor(s)TypeAccess
1May-2023Comprehensiveness and correspondence of place of death classifications: an international comparative analysisSousa, A. Bruno de ; Gomes, B. ; Cohen, J.; Lopes, Sílvia conferenceObjectopenAccess
22023Did we change for the better? Recoding place of death in Czechia, Estonia, Finland, Luxemburg and Portugal (2012-2021)Gomes, B. ; Sousa, A. Bruno de ; Cohen, J.; Lopes, S. conferenceObjectopenAccess
326-Apr-2023How were place of death trends for cancer patients affected by the COVID-19 pandemic? An international death certificate studyLopes, Sílvia; Sousa, Andrea Bruno de ; Cohen, Joachim Cohen; Gomes, Barbara conferenceObjectopenAccess
4Jun-2023Missing data on where people die: a death certificate study by world region, age, gender and cause of death.Lopes, S. ; Sousa, A. Bruno de ; Cohen, J.; Gomes, B. conferenceObjectopenAccess
529-Mar-2023Preferences about place of end-of-life care and death of patients with life-threatening illnesses and their families: a protocol for an umbrella reviewPinto, Sara ; Lopes, Silvia ; Sousa, Andrea Bruno de ; Gomes, Barbara articleopenAccess