Telephone advice lines available out-of-hours to people with palliative and end-of-life care needs: a qualitative interview study with professionals and development of a practical framework to improve services

Abstract

AbstractBackgroundPeople living at home with advanced illness require around-the-clock care. Telephone-based advice lines are critical for accessing help, yet evidence is limited.AimTo explore ‘out-of-hours’ telephone-based advice lines available to adults living at home with advanced illness and their carers across the UK, and construct a practical framework to improve services.DesignStructured qualitative interviews with thematic analysis. A patient and public involvement workshop was conducted to refine the proposed framework.Setting/participantsProfessionals with palliative/end-of-life care commissioning responsibilities, or knowledge of out-of-hours service provision, were purposively sampled to ensure UK-wide representation.ResultsSeventy-one interviews were conducted, covering 60 geographical areas. Five themes were identified.Availability:Ten models of advice lines were described. Variation led to confusion about who to call and when.Accessibility, awareness and promotion:It was assumed that patients/carers know who to call out-of-hours, but often they did not.Practicalities:Call handlers skills/expertise varied, which influenced how calls were managed. Possible responses ranged from simply signposting to organising home visits.Integration/continuity of care:Integration between care providers was limited by electronic medical records access and information sharing.Service structure/commissioning:Sustained funding was often an issue for charitably funded organisations.ConclusionsMultiple advice lines lead to confusion and delays in obtaining care, as many default to general ‘out-of-hours’ advice lines. Dedicated advice lines are valuable for patients with advanced illness as long as they are implemented well. A practical framework (including a comprehensive overview of components) is provided for guiding how these are delivered.Key statementsWhat is already known about the topic?People living at home with advanced illness and those that care for them need access to dedicated palliative and end-of-life care 24 hours a day, 7-days a week.While understanding of telephone advice lines often exists at a single service level, there is limited knowledge in terms of national provision.What does this paper add?This qualitative study provides an understanding of multiple telephone-based advice line services available out-of-hours at a national-level, and identifies a lack of consistency and challenges with integration between available services.Promotion of dedicated advice lines (or an area equivalent) needs to ensure that people with advanced illness are aware of how to access such support, but there is variation in how this is done.Incorporating the views of patients with advanced illness and carers in the development of telephone-based advice is essential to ensure the care delivered is centred around their needs.Implications for practice, theory or policyThe practical framework developed in this research (using key considerations from professionals based on structured interviews and a patient and public involvement workshop) can be used to guide commissioners and service providers.