iLIVE project: major international study into end-of-life care

12 November 2019

The University of Humanistic Studies is participating in a European project aimed at increasing our understanding of end-of-life care. The research will be conducted by an international consortium of research teams from ten different countries, and is funded by the European Union. The project leadership is in the hands of Professor Agnes van der Heide of Erasmus MC.  Professor Anne Goossensen is involved in the implementation on behalf of the University of Humanistic Studies. The consortium recently launched a website offering further information.

The study will describe the everyday experiences of patients and their (informal) caregivers in a cohort study conducted in ten (mainly European) countries. The researchers will identify the concerns, expectations and preferences experienced by patients in the palliative phase of the process of dying. The study also looks at the patients’ family members. Two specific interventions will be evaluated: the first concerning medication management, the second concerning a volunteer programme within a hospital setting. Several hospitals and hospices in the Rotterdam region are involved in the project.  

Specific goals

The project has a number of specific goals:

• To develop and evaluate a digital tool to help caregivers optimise medication management for patients in the final phase of life;
• To develop and evaluate an international volunteer (training) programme for patients in the final phase of life, inside a hospital;
• To determine the cost effectiveness of the first two goals by a) clarifying the concerns, expectations and preferences experienced by patients and their family members; b) explaining the variance resulting from differences in terms of culture, sex, age, and sociocultural background; 
• To establish a set of outcome variables plus methods for international benchmarking;• To increase the wider community’s awareness of death and dying. 

More information

Visit the website: https://www.iliveproject.eu/

Download een posterpresentation offering more information about the study into the role of volunteers, in which Anne Goossensen is involved.

Dutch researchers involved in the project

The project was applied for by an international consortium headed by Professor Agnes van der Heide (Erasmus MC). A team of researchers including Dr Lia van Zuylen (Erasmus MC), Dr Eric Geijteman and Professor Anne Goossensen (professor of Informal Care and Care Ethics, University of Humanistic Studies) is involved in the implementation of the four-year project.

The project is funded by the European Union as part of the Horizon 2020 programme.

The University of Humanistic Studies is participating in a European project aimed at increasing our understanding of end-of-life care. The research will be conducted by an international consortium of research teams from ten different countries, and is funded by the European Union. The project leadership is in the hands of Professor Agnes van der Heide of Erasmus MC. Professor Anne Goossensen is involved in the implementation on behalf of the University of Humanistic Studies. The consortium recently launched a website offering further information.