Academic Journal
Facilitators of and barriers to high-quality care at end-of-life: experiences of terminally ill patients and their relatives.
| Title: | Facilitators of and barriers to high-quality care at end-of-life: experiences of terminally ill patients and their relatives. |
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| Authors: | Jensen HI; Department of Anaesthesiology and Intensive Care, Lillebaelt Hospital, Vejle, University Hospital of Southern Denmark, Beriderbakken 4, Vejle, DK-7100, Denmark. hanne.irene.jensen@rsyd.dk.; Department of Anesthesiology and Intensive Care, Lillebaelt Hospital, Kolding, University Hospital of Southern Denmark, Sygehusvej 24, Kolding, DK-6000, Denmark. hanne.irene.jensen@rsyd.dk.; Department of Regional Health Research, University of Southern Denmark, Campusvej 55, Odense M, DK-5230, Denmark. hanne.irene.jensen@rsyd.dk., Jørgensen L; Specialised Palliative Care Team, Lillebaelt Hospital, University Hospital of Southern Denmark, Beriderbakken 4, DK-7100, Vejle, Denmark., Bertelsen L; Specialised Palliative Care Team, Lillebaelt Hospital, University Hospital of Southern Denmark, Beriderbakken 4, DK-7100, Vejle, Denmark., Bruun H; Department of Medicine, Lillebaelt Hospital, University Hospital of Southern Denmark, Beriderbakken 4, DK-7100, Vejle, Denmark. |
| Source: | BMC palliative care [BMC Palliat Care] 2026 May 21; Vol. 25 (1). Date of Electronic Publication: 2026 May 21. |
| Publication Type: | Journal Article |
| Language: | English |
| Journal Info: | Publisher: BioMed Central Country of Publication: England NLM ID: 101088685 Publication Model: Electronic Cited Medium: Internet ISSN: 1472-684X (Electronic) Linking ISSN: 1472684X NLM ISO Abbreviation: BMC Palliat Care Subsets: MEDLINE |
| Imprint Name(s): | Original Publication: London : BioMed Central, [2002- |
| MeSH Terms: | Terminal Care*/standards , Terminal Care*/psychology , Terminal Care*/methods , Terminally Ill*/psychology , Family*/psychology , Quality of Health Care*/standards, Interviews as Topic/methods ; Humans ; Female ; Male ; Aged ; Middle Aged ; Qualitative Research ; Aged, 80 and over ; Adult |
| Abstract: | Background: To ensure coherence and continuity of care for individual patients, it is necessary to improve collaboration between healthcare systems as well as between healthcare systems and patients. The objective of the study was to gain knowledge about the experiences of terminally ill patients and their relatives with the healthcare system to identify facilitators of and barriers to high-quality care in the last stage of patients' lives. Methods: Semi-structured interviews were conducted with terminally ill patients and their relatives. The data were analysed using content analysis. Results: Six patients and four relatives participated in the study. The analysis identified five themes: (1) continuity, coherence and timing: significance and challenges; (2) conversations about end-of-life: the need for an individual approach; (3) being seen and trusted; (4) "small" things may have a great significance; and (5) relatives have their own needs. Among patients and relatives who felt that the healthcare system had the overall overview and was present with the necessary help at the right time, the healthcare system provided a secure frame within which they could devote their energy to dealing with the impending farewell and trying to foster a high quality of life every day. However, in cases in which the healthcare system was not perceived to have the overall overview, patients and relatives became insecure and had to exert energy and effort to navigate the healthcare system themselves. One of the most important things for patients and relatives was that there was clear agreement regarding who was responsible for what and where they could call for help. Conclusion: The findings highlight the importance of continuity of care, an individual approach and the need to trust the patients. Adherence to these findings can help healthcare professionals and institutions improve end-of-life care. (© 2026. The Author(s).) |
| Competing Interests: | Declarations. Ethics approval and consent to participate: The study was approved by the Research Ethics Committee of the University of Southern Denmark (22-77189) and was registered with the Danish Data Protection Agency (22-55484). The study adheres to the Declaration of Helsinki. Informed consent was obtained from all participants. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests. |
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| Contributed Indexing: | Keywords: End-of-life, palliative care, quality of life, relatives, semistructured interviews, terminally ill patients |
| Entry Date(s): | Date Created: 20260522 Date Completed: 20260715 Latest Revision: 20260813 |
| Update Code: | 20260813 |
| PubMed Central ID: | PMC13371511 |
| DOI: | 10.1186/s12904-026-02155-4 |
| PMID: | 42169096 |
| Database: | MEDLINE |
| ISSN: | 1472-684X |
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| DOI: | 10.1186/s12904-026-02155-4 |