Background: As they near the end of life, many older people with serious chronic illness experience prolonged and complex periods of fluctuations in their physical health as well as psychological, social and existential well-being. Our understanding of these end-of-life trajectories is very limited focuses predominantly on physical function and clinical predictors and neglects subjective experiences and inter-individual differences. A better understanding of older people’s end-of-life trajectories, including what is shared among people and what is individually specific, is needed for an optimal provision of person-centered care and health services planning.
Objectives: The overall aim of the TRAJECT project is to identify generalisable and individually specific aspect of older people’s end-of-life trajectories and the circumstances that shape them. The aim is addressed through the following objectives:
1. To identify distinct temporal patterns of physical, social, psychological and existential health and well-being towards the end of life of older people with serious chronic illness and determine to which extent personal, clinical and social characteristics are associated with these patterns.
2. To understand commonalities, differences and changes over time in older people’s narratives of their health and well-being towards the end of life.
3. To integrate the quantitative longitudinal and serial narrative data to achieve in-depth understanding of the commonalities and inter-individual differences in the end-of-life trajectories of older people.
Design and methods: TRAJECT adopts a novel analytical and methodological framework examining trajectories through two distinct scientific lenses, both suited for uncovering variability as well as general principles. In a convergent mixed-methods design, it combines 1) a quantitative longitudinal study of health and well-being, along with a proxy-reported mortality-follow-back survey, to capture fluctuations in a structured and standardised way, and 2) a serial narrative interview study to explore the subjective stories and meanings behind changes in health and well-being. The findings of the quantitative and qualitative methods will be integrated through triangulation and by systematically threading key findings from one method across to the other. The research is conducted in Belgium.
Expected impact:
• The findings of this project will provide evidence on how illness, personal characteristics, professional and family care, and physical and social environments interact to shape older people’s end-of-life trajectories.
• TRAJECT will likely result in a new typology of end-of-life trajectories that does not classify them based on cause of death alone but through a combination of personal, clinical and experiential characteristics that are more indicative of shared trajectories. This will enable more accurate identification of groups with shared needs or risks.
• By foregrounding variation and subjective experience, our findings will challenge prevalent assumptions underlying current developments in clinical practice and policy, such as efforts to identify uniform indicators for initiation of advance care planning or specialist palliative care.
• We will contribute innovative methodological and practical guidance on designing feasible and acceptable longitudinal studies with older people nearing the end of life (including inclusion criteria and retention strategies), and on integrating mixed-methods data, particularly through the systematic use of the “following-a-thread” method.
