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Advanced chronic liver disease in the last year of life: a mixed methods study to understand how care in a specialist liver unit could be improved
  1. Joseph Low1,
  2. Sarah Davis1,
  3. Victoria Vickerstaff1,
  4. Lynda Greenslade2,
  5. Katherine Hopkins3,
  6. Andrew Langford4,
  7. Aileen Marshall2,
  8. Douglas Thorburn2,
  9. Louise Jones1
  1. 1Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK
  2. 2Sheila Sherlock Liver Unit, Royal Free Hospital, University College London Institute of Liver and Digestive Health, UCL Royal Free Campus, London, UK
  3. 3Department of Palliative Care, Royal Free London NHS Foundation Trust, London, UK
  4. 4British Liver Trust, Bournemouth, UK
  1. Correspondence to Dr Joseph Low; joseph.low{at}ucl.ac.uk

Abstract

Objective To identify the limitations in palliative care provision in the last year of life for people with liver cirrhosis and potential barriers to and enablers of palliative care.

Design Mixed methods, including a retrospective case note review, qualitative focus groups and individual interviews.

Setting A tertiary referral liver centre in the south of England (UK).

Participants Purposively selected case notes of 30 people with cirrhosis who attended the tertiary referral liver centre and died during an 18-month period; a purposive sample of 22 liver health professionals who participated in either focus groups or individual interviews.

Primary and secondary outcomes Data collected from case notes included hospital admissions, documented discussions of prognosis and palliative care provision. Qualitative methods explored management of people with cirrhosis, and barriers to and enablers of palliative care.

Results Participants had high rates of hospital admissions and symptom burden. Clinicians rarely discussed prognosis or future care preferences; they lacked the skills and confidence to initiate discussions. Palliative care provision occurred late because clinicians were reluctant to refer due to their perception that reduced liver function is reversible, poor understanding of the potential of a palliative approach; palliative care was perceived negatively by patients and families.

Conclusions People dying with cirrhosis have unpredictable trajectories, but share a common pathway of frequent admissions and worsening symptoms as death approaches. The use of clinical tools to identify the point of irreversible deterioration and joint working between liver services and palliative care may improve care for people with cirrhosis.

  • palliative care
  • cirrhosis
  • hepatology
  • mixed methods

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • Contributors JL, SD, VV, LJ, LG and KH were responsible for the study concept and design; JL and SD were responsible for the acquisition of the data; JL, SD, VV, LJ, DT, AM, LG, KH and AL were responsible for analysis or interpretation of the data; JL, SD, VV and LJ drafted the initial manuscript; DT, AM, LG, KH and AL revised the manuscript critically for important intellectual content; all authors gave the final approval of the version to be published.

  • Funding This study received no specific grant from any funding agency in the public, commercial or not-for-profit sectors, but the research department responsible for this study is provided core funding by Marie Curie in order to conduct the study.

  • Competing interests None declared.

  • Ethics approval Ethical approval was sought, but deemed unnecessary by the NRES Committee London—West London & GTAC (ref 14/LO/0799). NHS permission to conduct the clinical case note review and the qualitative interviews with liver health professionals was obtained from the Royal Free London Clinical Governance Lead for Hepatology and Palliative Care under the remit of health service improvement.

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

  • Data sharing statement Participants did not provide consent for the transcripts to be released outside of the remit of this study.

  • Press Release Yes

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