Browse by author
Lookup NU author(s): Dr Felicity DewhurstORCiD, Philip MordueORCiD, Dr Charlotte Stenson, Dr Mark AdleyORCiD, Professor Katie BrittainORCiD, Professor Barbara HanrattyORCiD
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© 2026. The Author(s). BACKGROUND: Advance care planning helps people plan for and communicate preferences about future care, including when decision-making capacity is lost. For people living with advanced multiple long-term conditions, advance care planning is challenging because decline may be unrecognised, responsibility is diffused across condition-specific services, and care is fragmented. AIM: To explore health and social care professionals' perspectives on challenges and best practices in advance care planning for people with advanced multiple long-term conditions, and to generate recommendations for improving practice. METHODS: Reflexive thematic analysis of advance care planning-related interview data from a wider study examining palliative care needs and end-of-life challenges for people with multiple long-term conditions. Twenty-seven semi-structured interviews were undertaken with health and social care professionals, commissioners, and service managers in four regions of England. RESULTS: Three themes were generated: (1) Making multiple long-term conditions decline visible - cumulative illness burden and social adversity contributed to late recognition of deterioration; (2) System and organisational barriers - resource constraints, fragmented care, poor information sharing, and limited training created unclear ownership of advance care planning, with particular risks for people experiencing inequity; (3) Delivering advance care planning - effective advance care planning was introduced early, revisited iteratively, grounded in trusting relationships, and included families and care networks. CONCLUSIONS: For advanced multiple long-term conditions, advance care planning is undermined by prognostic uncertainty, care fragmentation, and inequities. Embedding prompted, iterative advance care planning into routine care, using markers such as functional decline and escalating support needs, may normalise conversations and support earlier documentation of preferences. This analysis extends needs-focused work by specifying practical mechanisms to initiate, share ownership of, and sustain advance care planning across fragmented services.
Author(s): Simpson G, Dewhurst F, Mordue P, Stenson C, Adley M, Brittain K, Hanratty B
Publication type: Article
Publication status: Published
Journal: BMC Palliative Care
Year: 2026
Volume: 25
Online publication date: 04/06/2026
Acceptance date: 29/05/2026
Date deposited: 17/08/2026
ISSN (electronic): 1472-684X
Publisher: BioMed Central Ltd
URL: https://doi.org/10.1186/s12904-026-02173-2
DOI: 10.1186/s12904-026-02173-2
Data Access Statement: The data analysed in this study are not publicly available due to confidentiality agreements and the sensitive nature of the interview content. Anonymised extracts are presented within the manuscript. Requests for access to anonymised data may be considered on reasonable request and should be directed to the corresponding author (mark.adley@newcastle.ac.uk), subject to appropriate governance approvals.
PubMed id: 42243823
Altmetrics provided by Altmetric
