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Palliative Care for Patients with End-Stage Liver Disease on the Liver Transplant Waiting List: An International Systematic Review

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Abstract

People with end-stage liver disease on the liver transplant waiting list have high symptom burden, which can successfully be addressed by specialist palliative care. Potential tensions with the perceived curative nature of liver transplant make delivering specialist palliative care challenging. This systematic review seeks to establish what is known on the impact of specialist palliative care for patients on liver transplant waiting lists, healthcare professionals’ perspectives of providing specialist palliative care for this population, and uptake of advance care planning (ACP). Medline, Embase, and CINAHL were searched to May 5, 2020. Qualitative and quantitative findings were grouped together according to main relevant themes. Eight studies of mixed quality and mainly quantitative, were identified. Findings suggest early palliative care intervention improve patients’ symptoms and prompt ACP conversations, but patients on the waiting list receive limited palliative care input. Liver physicians’ lack of clarity on referral criteria and liver transplant patients’ concerns of being abandoned, were reasons for reluctance to refer to specialist palliative care. They felt referral to specialist palliative care is appropriate only for patients receiving hospice or end of life care. Uptake and understanding of ACP and goals of care designation by patients is poor. This review found evidence of benefit of specialist palliative care for patients on liver transplant waiting lists, but found in a limited understanding of their role. Evidence is limited to studies from North America. Future research is needed to understand better how palliative care could be provided into this clinical environment.

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Fig. 1

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Abbreviations

ACP:

Advance care planning

ESLD:

End-stage liver disease

LT:

Liver transplant

MELD:

Model of end-stage liver disease

SPC:

Specialist palliative care

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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 conducting this study is provided core funding by Marie Curie (Grant reference: MCCC-FPO-16-U). PS, JTSL and BC’s posts are supported by Marie Curie core and programe grants (MCCC-FCO-16-U and MCCC-FPO-16-U). The funder played no role in the collection, analysis and interpretation of data, in the writing of the report; and in the decision to submit the article for publication.

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SSV, BC, AM, RC, PS and JTSL were responsible for the study concept and design; SSV, JTSL, BC were responsible to the acquisition of the data; SSV, BC and JTSL were responsible for analysis or interpretation of the data; SSV drafted the initial manuscript; BC, AM, RC, PS and JTSL revised the manuscript critically for important intellectual content; all authors gave the final approval of the version to be published.

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Correspondence to Joseph T. S. Low.

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Vijeratnam, S.S., Candy, B., Craig, R. et al. Palliative Care for Patients with End-Stage Liver Disease on the Liver Transplant Waiting List: An International Systematic Review. Dig Dis Sci 66, 4072–4089 (2021). https://doi.org/10.1007/s10620-020-06779-1

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