End-of-Life Care for Patient with Liver Disease

BackgroundLiver 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.AimTo 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.DesignSystematic review with thematic synthesis complying to the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) statement.Setting and participantsDatabase 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.FindingsOnly 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.ConclusionThere 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.

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How can primary care enhance end-of-life care for liver disease? Qualitative study of general practitioners’ perceptions and experiences

BMJ Open ◽

10.1136/bmjopen-2017-017106 ◽

2017 ◽

Vol 7 (8) ◽

pp. e017106 ◽

Cited By ~ 8

Author(s):

Holly Standing ◽

Helen Jarvis ◽

James Orr ◽

Catherine Exley ◽

Mark Hudson ◽

...

Keyword(s):

Primary Care ◽

Palliative Care ◽

Liver Disease ◽

End Of Life ◽

General Practitioners ◽

End Of Life Care ◽

Symptom Relief ◽

Social Consequences ◽

Life Care ◽

Qualitative Interview Study

BackgroundLiver 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.ObjectiveTo explore GPs’ experiences and perceptions of how primary care can enhance end-of-life care for patients with liver disease.DesignQualitative interview study, thematic analysis.ParticipantsPurposive sample of 25 GPs from five regions of England.ResultsGPs 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.ConclusionsEnd-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.

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