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  • What do we know about patients’ perspectives and expectations relating to palliative and end-of-life care in advanced liver disease? A systematic review of qualitative literature using ENTREQ guidelines

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Systematic review
What do we know about patients’ perspectives and expectations relating to palliative and end-of-life care in advanced liver disease? A systematic review of qualitative literature using ENTREQ guidelines
  1. Debasish Das1,2,
  2. Mafas Ali2,
  3. Ithsham Ali Hussain2,
  4. Josh Thomas Nigel Ingram2,
  5. Rachel Sarah Johnstone2,
  6. Jade Jessica Lopes2,
  7. Tasneem Wadee2 and
  8. Nandini Chakraborty3,4
  1. 1 Department of Digestive Diseases, Kettering General Hospital, Kettering, UK
  2. 2 Medical School, University of Leicester, Leicester, UK
  3. 3 PIER Team, Leicestershire Partnership NHS Trust, Leicester, UK
  4. 4 Department of Health Sciences, University of Leicester, Leicester, UK
  1. Correspondence to Dr Debasish Das, Department of Digestive Diseases, Kettering General Hospital, Kettering NN16 8UZ, UK; debasishdas{at}nhs.net

Abstract

Background Liver disease, a major cause of death worldwide, affects younger people compared with other major causes of death. Palliative and end-of-life care for these patients are often overlooked. Guidelines are emerging on what good end-of-life care in liver disease should look like, but there is a dearth of research into patients’ perspectives even though they are most affected by these guidelines.

Aim To explore current knowledge and understanding of patients’ lived experiences, perspectives and expectations in relation to palliative and end-of-life care in advanced liver disease.

Design Systematic review with thematic synthesis complying to the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) statement.

Setting and participants Database searches (Ovid Medline, 1946–2021 and Web of Science, 1970–2021) to identify qualitative studies exploring patients’ perspectives of palliative and end-of-life care in advanced liver disease.

Findings Only eight articles met all criteria. Themes demonstrated repeated hospital admissions towards the end of life, lack of coordinated care in community and barriers in discussion about palliative care in end-stage liver disease due to lack of confidence among professionals and a negative view about palliative care among patients and carers. Emotional, financial and disability-related needs of patients and their carers are often neglected.

Conclusion There is a dearth of studies exploring patients’ perspectives about care in advanced liver disease relating to palliative and end-of-life care. Lack of coordinated community support and honest conversations around palliative care leads to reduced quality of life. More primary research from diverse population is needed to improve palliative care and end-of-life care in end-stage liver disease.

  • chronic conditions
  • symptoms and symptom management
  • supportive care
  • communication
  • quality of life

Data availability statement

All data relevant to the study are included in the article or uploaded as supplemental information. The data used in this systematic review are available freely from the included studies and no primary research was involved. The data collection form used has been incorporated in the submission and the thematic analysis of the studies involved is discussed in the article itself.

https://doi.org/10.1136/bmjspcare-2021-003057

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    Data availability statement

    All data relevant to the study are included in the article or uploaded as supplemental information. The data used in this systematic review are available freely from the included studies and no primary research was involved. The data collection form used has been incorporated in the submission and the thematic analysis of the studies involved is discussed in the article itself.

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    Footnotes

    • Contributors Original concept of the systematic review was by DD. All authors (DD, MA, IAH, JTNI, RSJ, JJL, TW, NC) contributed to the development of review framework, review of search output, quality assessment of papers and data extraction. Thematic synthesis and writing of discussion and conclusion were contributed by all authors. NC contributed significantly to manuscript formatting and revision. DD and NC are guarantors of the content.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None declared.

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

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.