How Preferences and Reality on Where We Die Unfold: A Four-Country Longitudinal Qualitative Study (EOLinPLACE)

While there is a growing body of evidence on end-of-life (EOL) care preferences such as place of death, research remains limited in key areas. This includes gaps in understanding preferred and actual places of EOL care and death (dying places), potential shifts of preferences over time, and their (non-)alignment with reality. We aimed to explore how preferred and actual dying places unfold for adults with life-threatening illness and their family caregivers in different socio-cultural settings.

A qualitative longitudinal study in the Netherlands, Portugal, Uganda, and the United States (June 2023-August 2025) in adults (≥ 18 y) with cancer, dementia, neuromuscular or heart and cerebrovascular disease and their family caregivers. We conducted a semi-structured interview at inclusion, followed by at least 2 interviews (between 3 weeks to 18 months after), including post-death with the family caregiver. Fieldnotes of informal conversations and observations complemented the transcripts. Analysis was based on principles of applied qualitative ethnography, combining applied thematic analysis with thematic network analysis.

Fourteen patients participated, eight of whom were followed until death. Home was the most preferred dying place. We identified 3 themes: (1) Beyond the preferred: choosing otherwise highlighted how factors (the burden of receiving care, anticipated trauma of death at home, and urgent care needs) drove decisions around place; (2) Family caregiver commitment and burden affecting realisation of patient preferences illustrated the critical role of family caregivers; and (3) Navigating care shapes dying places showed how the healthcare system and skills to navigate it, influenced dying places.

Preferences and decisions were influenced by a complex interplay of personal, relational, and contextual considerations. The prominence of these considerations may vary by country, but their interaction and the way they shape preferred and actual dying places appear to be a shared phenomenon. Clinicians, policymakers, educators, and researchers must consider patients' and family caregivers' preferences along with influencing drivers that can support or limit choice.

Patient and public involvement and engagement (PPIE) was embedded in this international project from the start, through formal partnerships established with two international organisations representing patients and informal carers, namely the International Alliance of Patients' Organisations (IAPO) and Eurocarers. Representatives of both organisations worked closely with the research team and are members of the project advisory board. They contributed to the development of the study design and materials, to the training of researchers helping ensure interviews with patients and family caregivers were conducted in a sensitive and appropriate manner, and to the interpretation of findings through various meetings. They will also help to disseminate the findings to engage patients, informal carers and the wider public.