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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

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.

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