Quality of end-of-life care with non-malignant liver disease: Analysis of the VOICES National Survey of Bereaved People.


Journal

Liver international : official journal of the International Association for the Study of the Liver
ISSN: 1478-3231
Titre abrégé: Liver Int
Pays: United States
ID NLM: 101160857

Informations de publication

Date de publication:
02 2023
Historique:
revised: 25 08 2022
received: 24 02 2022
accepted: 12 09 2022
pubmed: 18 9 2022
medline: 25 1 2023
entrez: 17 9 2022
Statut: ppublish

Résumé

Patients with liver disease struggle to access palliative care. We aimed to compare carers' perceptions of end-of-life care for decedents with non-malignant liver disease, malignant liver disease and other non-malignant diseases, and to identify associated factors in non-malignant liver disease. A retrospective analysis of individual-level data from the National Survey of Bereaved People 2011-2015. More decedents with non-malignant liver disease died in hospital than other diseases (76.9% vs. 40.9% vs. 50.2%, p < .001), despite 89% wishing to die at home. Fewer decedents received home/hospice specialist palliative care compared with those with malignant liver disease (10.0% vs. 54.6%, p < .001). Carers of decedents with non-malignant liver disease were less likely to rate overall end-of-life care quality as outstanding/excellent (29.3% vs. 43.9% vs. 42.3%, p < .001). For this group, poorer care was associated with younger (65-74 vs. 18-64 years, OR [odds ratio] 1.39, p = .01), more socially deprived decedents (OR .78, p = .02), and better care with greater social support (OR 1.82, p < .001) and community specialist palliative care involvement (OR 1.80, p < .001). There was no association between outstanding/excellent rating and underlying cause of non-malignant liver disease (alcohol-related vs. non-alcohol-related, p = .92) or place of death (hospital vs. non-hospital, p = .476). End-of-life care could be improved by integrating hepatology and community services, particularly specialist palliative care, and advance care planning to facilitate care and death (where desired) at home. However, death in hospital may be appropriate for those with non-malignant liver disease.

Sections du résumé

BACKGROUND AND AIMS
Patients with liver disease struggle to access palliative care. We aimed to compare carers' perceptions of end-of-life care for decedents with non-malignant liver disease, malignant liver disease and other non-malignant diseases, and to identify associated factors in non-malignant liver disease.
METHODS
A retrospective analysis of individual-level data from the National Survey of Bereaved People 2011-2015.
RESULTS
More decedents with non-malignant liver disease died in hospital than other diseases (76.9% vs. 40.9% vs. 50.2%, p < .001), despite 89% wishing to die at home. Fewer decedents received home/hospice specialist palliative care compared with those with malignant liver disease (10.0% vs. 54.6%, p < .001). Carers of decedents with non-malignant liver disease were less likely to rate overall end-of-life care quality as outstanding/excellent (29.3% vs. 43.9% vs. 42.3%, p < .001). For this group, poorer care was associated with younger (65-74 vs. 18-64 years, OR [odds ratio] 1.39, p = .01), more socially deprived decedents (OR .78, p = .02), and better care with greater social support (OR 1.82, p < .001) and community specialist palliative care involvement (OR 1.80, p < .001). There was no association between outstanding/excellent rating and underlying cause of non-malignant liver disease (alcohol-related vs. non-alcohol-related, p = .92) or place of death (hospital vs. non-hospital, p = .476).
CONCLUSIONS
End-of-life care could be improved by integrating hepatology and community services, particularly specialist palliative care, and advance care planning to facilitate care and death (where desired) at home. However, death in hospital may be appropriate for those with non-malignant liver disease.

Identifiants

pubmed: 36114763
doi: 10.1111/liv.15428
pmc: PMC10087137
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

308-316

Subventions

Organisme : Department of Health
Pays : United Kingdom

Informations de copyright

© 2022 The Authors. Liver International published by John Wiley & Sons Ltd.

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Auteurs

Roberta I Jordan (RI)

Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.

Yousuf ElMokhallalati (Y)

Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.

Lynsey Corless (L)

Hull York Medical School, University of Hull, Hull, UK.

Michael Bennett (M)

Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.

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