Abstract 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.
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机译:摘要 背景和目的 肝病患者难以获得姑息治疗。我们旨在比较护理人员对非恶性肝病、恶性肝病和其他非恶性疾病死者临终关怀的看法,并确定非恶性肝病的相关因素。方法 对 2011-2015 年全国丧亲者调查中的个人层面数据进行回顾性分析。结果 非恶性肝病患者住院死亡多于其他疾病(76.9% vs. 40.9% vs. 50.2%, p?.001),尽管89%的人希望死在家中。与恶性肝病患者相比,接受家庭/临终关怀专家姑息治疗的死者较少(10.0% vs. 54.6%,p?。001). 非恶性肝病死者的护理人员不太可能将整体临终关怀质量评为优秀/优秀(29.3% vs. 43.9% vs. 42.3%, p?.001). 对于该组,较差的护理与年轻(65-74 岁 vs. 18-64 岁,或 [比值比] 1.39,p?=?。01),更社会贫困的死者(OR .78,p?=?。02),以及更好的护理和更大的社会支持(OR 1.82,p?。001)和社区专科姑息治疗参与(OR 1.80,p?。001). 优秀/优秀评级与非恶性肝病的潜在病因之间没有关联(酒精相关与非酒精相关,p?=?。92)或死亡地点(医院与非医院,p?=?。476).结论 通过整合肝病学和社区服务,特别是专科姑息治疗,以及预先护理计划,可以改善临终关怀,以促进在家中的护理和死亡(如果需要)。然而,对于非恶性肝病患者,住院死亡可能是合适的。
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