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How can primary care enhance end-of-life care for liver disease? Qualitative study of general practitioners’ perceptions and experiences
  1. Holly Standing1,
  2. Helen Jarvis1,
  3. James Orr2,
  4. Catherine Exley3,
  5. Mark Hudson2,4,
  6. Eileen Kaner1,
  7. Barbara Hanratty1
  1. 1 Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK
  2. 2 Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne, UK
  3. 3 Faculty of Health and Life Sciences, Northumbria University, Newcastle upon Tyne, UK
  4. 4 Liver Unit, Freeman Hospital, High Heaton, Newcastle upon Tyne, UK
  1. Correspondence to Professor Barbara Hanratty; barbara.hanratty{at}newcastle.ac.uk

Abstract

Background Liver disease is the third most common cause of premature death in the UK. The symptoms of terminal liver disease are often difficult to treat, but very few patients see a palliative care specialist and a high proportion die in hospital. Primary care has been identified as a setting where knowledge and awareness of liver disease is poor. Little is known about general practitioners’ (GPs) perceptions of their role in managing end-stage liver disease.

Objective To explore GPs’ experiences and perceptions of how primary care can enhance end-of-life care for patients with liver disease.

Design Qualitative interview study, thematic analysis.

Participants Purposive sample of 25 GPs from five regions of England.

Results GPs expressed a desire to be more closely involved in end-of-life care for patients with liver disease but identified a number of factors that constrained their ability to contribute. These fell into three main areas; those relating directly to the condition, (symptom management and the need to combine a palliative care approach with ongoing medical interventions); issues arising from patients’ social circumstances (stigma, social isolation and the social consequences of liver disease) and deficiencies in the organisation and delivery of services. Collaborative working with support from specialist hospital clinicians was regarded as essential, with GPs acknowledging their lack of experience and expertise in this area.

Conclusions End-of-life care for patients with liver disease merits attention from both primary and secondary care services. Development of care pathways and equitable access to symptom relief should be a priority.

  • terminal care
  • palliative care
  • liver diseases
  • patient care

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

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Footnotes

  • Contributors BH, EK, MH, JO and CE designed the study. HS carried out the interviews. HS undertook the main analysis supported by BH and HJ. HS, HJ and BH drafted the manuscript, and all authors commented and approved the final version.

  • Funding This research is funded by the National Institute for Health Research School for Primary Care Research (NIHR SPCR).

  • Disclaimer The views are those of the authors and not necessarily those of the NIHR, the NHS or the Department of Health.

  • Competing interests None declared.

  • Patient consent No patients were involved in this study.

  • Ethics approval Health Research Authority and Newcastle University Research Ethics (Ref 188275)

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement We do not have any additional unpublished data that can be shared.

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