Brussels, Belgium – September 10, 2026
A comprehensive systematic review and thematic synthesis of qualitative research, published today in Social Science & Medicine, finds that older people living with serious chronic illnesses cherish continuity of self‑identity above all other concerns when facing the end of life.
Context & Significance
The desire for personal continuity has long been recognized in hospice and palliative care literature, but few studies have aggregated evidence across diverse cultural contexts. The new review, led by Professor Lara Pivodic (Université Libre de Bruxelles) and co‑author Emma Gobiet, fills this gap by synthesizing findings from Europe, North America, Asia, and Africa, offering a global perspective on end‑of‑life values.
Study Scale & Design
The research team conducted a systematic search of PubMed, PsycINFO, Scopus, and regional databases up to June 2026, selecting studies that employed interviews, focus groups, or ethnographic observation with participants aged 65 or older diagnosed with progressive chronic conditions (e.g., heart failure, COPD, neurodegenerative disease). After screening 4,587 records, 73 studies met inclusion criteria. The authors applied a rigorous thematic synthesis method, coding passages line‑by‑line and iteratively developing higher‑order themes.
Key Findings
- Identity as a Core Value – 68 % of studies highlighted the need to remain true to one’s life story, values, and roles.
- Social Relationships – Maintaining meaningful relationships was second only to identity, with participants emphasizing the importance of being recognized for who they are, not merely for their disease.
- Treatment Preferences – When faced with aggressive interventions, many respondents prioritized options that preserved autonomy and personal narrative, even if that meant a shorter lifespan.
- Cultural Variations – While the overarching theme was universal, the expression of identity differed: Western participants emphasized individual legacy, whereas Asian and African participants stressed relational continuity within family and community.
"I want to be remembered as the mother who taught my children to sing, not as a patient on a hospital bed," said Maria López, a 78‑year‑old participant from Spain (quoted verbatim from the original study).
Implications & Future Directions
The findings suggest that clinicians should integrate identity‑focused conversations into advance‑care planning, ensuring that treatment goals align with patients’ sense of self. Policy makers might consider funding programs that support legacy projects, storytelling workshops, and family‑mediated decision‑making.
Sources
- Gobiet, E., Pivodic, L., et al. (2026). 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. Social Science & Medicine, 315, 119220. DOI: 10.1016/j.socscimed.2026.119220
- Press release, Université libre de Bruxelles, September 10 2026.
FIRAT Editorial Board
Institutional Research Desk · Foresight Institute of Research and Translation
The collective editorial and research translation board of FIRAT, synthesising peer-reviewed evidence, policy briefs, and division milestones across our seven foundational research pillars.
