Older people with serious chronic illnesses want, above all, to be able to remain true to themselves at the end of their lives

A new large-scale international study conducted by the VUB shows that seriously ill older people have a deep need to retain their identity, familiar routines and social relationships.

10/09/2026

BRUSSELS, 10 September 2026 — Older people with serious chronic illnesses who are approaching the end of their lives experience a strong and universal desire for continuity. This is the finding of a new systematic review and synthesis of qualitative studies, published in the prestigious scientific journal *Social Science & Medicine*. This study was conducted as part of the TRAJECT project at the Université libre de Bruxelles, funded by the European Research Council (ERC), under the supervision of Professor Lara Pivodic and the lead author, Emma Gobiet.

This study brings together the testimonies of 464 seriously ill older people from different parts of the world, including Europe, North America and Asia. By systematically analysing and coding the results of countless in-depth interviews, the researchers succeeded in identifying a universal core message. The primary desire of these older people was found to be that of maintaining a sense of continuity in their lives as their health deteriorates.

This desire for continuity manifests itself on three different levels. Firstly, there is a personal and psychological dimension: older people want those around them and their carers to continue to see them as the person they have always been, whilst honouring their life story. Then there is a social dimension, characterised by the need to be surrounded and cared for by familiar and loved ones, and to be treated by others in a familiar and equal manner. Finally, there is a behavioural dimension: older people wish to continue with their usual activities. This can range from continuing to dress themselves independently for as long as possible to pursuing a beloved hobby such as gardening, even on a modest scale.

“As a granddaughter, writing this study was of great personal importance to me,” explains Emma Gobiet, lead author and PhD student at the VUB. “We find that, at the end of life, older people wish above all to remain true to themselves. The most important thing we can do, as a society and as carers, is to recognise this desire for continuity, to validate it and to support it as best we can. Even if, due to physical limitations, it is no longer really possible for them to continue doing the things they are used to, the simple act of acknowledging this loss and the frustration that comes with it is, in itself, a huge source of support.”

The study highlights that the focus of society and the medical community is often too one-sided, concentrating on physical decline and the purely clinical aspects of care. The TRAJECT project therefore advocates a broader, more holistic approach to end-of-life care, in which the older person’s personal identity and life story take centre stage. This requires a genuine cultural shift, not only within the healthcare sector, but also in our wider society.

“Our research forms a fundamental pillar of our TRAJECT project, funded by the European Research Council (ERC), in which we are conducting a detailed study of the complex life trajectories of seriously ill older people,” explains Professor Lara Pivodic, an ERC grant holder and principal investigator. “Our findings convincingly demonstrate that high-quality end-of-life care is inextricably linked to support for a person’s identity and relational stability. Recognising these human needs is essential to ensuring the dignity of older people in the final phase of their lives.”

Reference: The paper entitled ‘Longing for continuity: A systematic review and thematic synthesis of qualitative research on the experience of older people living with chronic illness towards the end of life’ was published in Social Science & Medicine (DOI: 10.1016/j.socscimed.2026.119220).

Contact:

Emma Gobiet:

Lara Pivodic:

About TRAJECT: TRAJECT is a project funded by the European Research Council (ERC, TRAJECT, 101077555), led by Professor Lara Pivodic at the Université libre de Bruxelles (End-of-Life Care Research Group). The project studies the life courses of older people with serious chronic illnesses, with a view to identifying common patterns and individual differences. The aim is to improve end-of-life care and support (https://traject.research.vub.be/).

ERC disclaimer: The views and opinions expressed are those of the authors alone and do not necessarily reflect those of the European Union or the European Health and Digital Agency (HADEA). Neither the European Union nor the funding body can be held responsible for these views and opinions.