Integrating lived experiences of out-of-hours health services for people with palliative and end-of-life care needs with national datasets for people dying in Scotland in 2016: A mixed methods, multi-stage design

Bruce Mason, Emma Carduff, Sheonad Laidlaw, Marilyn Kendall, Scott Murray, Anne Finucane, Sebastien Moine, Joannes J Kerssens , Andrew Stoddart, Sian Tucker, Erna Haraldsdottir, Lewis D Ritchie, Marie T Fallon, Jeremy Keen, Stella Macpherson, Lorna Moussa, Kirsty Boyd

Research output: Contribution to journalArticlepeer-review

Abstract

Background: Unscheduled care is used increasingly during the last year of life by people known to have significant palliative care
needs.
Aim: To document the frequency and patterns of use of unscheduled healthcare by people in their last year of life and understand the
experiences and perspectives of patients, families and professionals about accessing unscheduled care out-of-hours.
Design: A mixed methods, multi-stage study integrating a retrospective cohort analysis of unscheduled healthcare service use in the
last year of life for all people dying in Scotland in 2016 with qualitative data from three regions involving service users, bereaved
carers and general practitioners.
Setting: Three contrasting Scottish Health Board regions and national datasets for the whole of Scotland.
Results: People who died in Scotland in 2016 (n = 56,407) had 472,360 unscheduled contacts with one of five services: telephone
advice, primary care, ambulance service, emergency department and emergency hospital admission. These formed 206,841
individual continuous unscheduled care pathways: 65% starting out-of-hours. When accessing healthcare out-of-hours, patients and
carers prioritised safety and a timely response. Their choice of which service to contact was informed by perceptions and previous
experiences of potential delays and whether the outcome might be hospital admission. Professionals found it difficult to practice
palliative care in a crisis unless the patient had previously been identified.
Conclusion: Strengthening unscheduled care in the community, together with patient and public information about how to access
these services could prevent hospital admissions of low benefit and enhance community support for people living with advanced
illness.
Original languageEnglish
Pages (from-to)478 - 488
JournalPalliative Medicine
Volume36
Issue number3
DOIs
Publication statusPublished - 30 Mar 2022

Keywords

  • After-Hours Care/standards
  • unscheduled care
  • Palliative care
  • Terminal Care
  • Advance care planning
  • anticipatory care planning

Fingerprint

Dive into the research topics of 'Integrating lived experiences of out-of-hours health services for people with palliative and end-of-life care needs with national datasets for people dying in Scotland in 2016: A mixed methods, multi-stage design'. Together they form a unique fingerprint.

Cite this