Uncovering commonalities and differences: Towards a novel framework for identifying end-of-life trajectories of older people with serious chronic illness

Older people who die from serious chronic disease typically experience long periods (months or years) of illness and complex fluctuations in their physical health and in their social, psychological, and existential well-being. This project will conduct a mixed-method, inter-disciplinary investigation of these end-of-life trajectories. It responds to the long-standing scientific challenge of identifying commonalities in end-of-life trajectories across groups of people, without masking important inter-individual differences. Its central aim is to gain understanding of what is generalisable and what is individually specific in older people’s end-of-life trajectories and in the
circumstances that shape them. This project applies a novel methodological and analytical framework, examining trajectories through two distinct scientific lenses: a structured quantitative approach known from the biomedical sciences to capture fluctuations in a standardised way, and an experience-focused qualitative approach from the humanities to study the subjective stories and meanings behind changes
in health. In a convergent mixed-methods investigation, this work combines 1) a large quantitative longitudinal study and 2) a serial narrative interview study; both with older people (70 years or over) with serious chronic illness who are nearing the end of life. The results of these two methods will be integrated through triangulation and by systematically threading key findings from one method across to the other. This work will lead to a fundamental re-thinking of how we examine, understand, and categorise end-of-life trajectories. It will reveal the full extent of their complexity and indicate possibilities and limits of generalisation. These novel insights will propel scientific
advances towards achieving a good end of life in ageing societies. They will also drive methodological innovation beyond my field, balancing the perspective of the researcher and the researched.

European Research Council (ERC)