Project

Summary

Respecting preferences for place of death is important. The first step is to classify the dying places (home, hospital, among others) in a way that is meaningful for individuals. In this context, the EU-funded EOLinPLACE project will create a solid base for the first international classification tool to map preferred and actual places towards death. We will conduct a mixed-methods study in four countries covering existing target variation (Portugal, Netherlands, Uganda, USA) to explore nuances and commonalities in people’s end of life pathways. The findings will provide new insights into how to care for the dying.

Why does it matter?

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.

Vision and aim

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, as a way to discern diversity in the places people receive care and die and individual preferences in different parts of the world.

We want 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).

Methods

To achieve our aim, 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 nuancesand 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 qualityand interpretability. All data will be integrated to deepen understanding of different end of life pathways in caring environments and what influences them.