Woodland Hazel, Hudson Ben, Forbes Karen, McCune Anne, Wright Mark
Department of Hepatology, University Hospitals Bristol NHS Foundation Trust, Bristol, UK.
Department of Hepatology, Royal Devon and Exeter NHS Foundation Trust, Exeter, UK.
Frontline Gastroenterol. 2019 Sep 10;11(3):218-227. doi: 10.1136/flgastro-2019-101180. eCollection 2020.
The mortality rate from chronic liver disease in the UK is rising rapidly, and patients with advanced disease have a symptom burden comparable to or higher than that experienced in other life-limiting illnesses. While evidence is limited, there is growing recognition that care of patients with advanced disease needs to improve. Many factors limit widespread provision of good palliative care to these patients, including the unpredictable trajectory of chronic liver disease, the misconception that palliative care and end-of-life care are synonymous, lack of confidence in prescribing and lack of time and resources. Healthcare professionals managing these patients need to develop the skills to ensure effective delivery of core palliative care, with referral to specialist palliative care services reserved for those with complex needs. Core palliative care is best delivered by the hepatology team in parallel with active disease management. This includes ensuring that discussions about disease trajectory and advance care planning occur alongside active management of disease complications. Liver disease is strongly associated with significant social, psychological and financial hardships for patients and their carers; strategies that involve the wider multidisciplinary team at an early stage in the disease trajectory help ensure proactive management of such issues. This review summarises the evidence supporting palliative care for patients with advanced chronic liver disease, presents examples of current best practice and provides pragmatic suggestions for how palliative and disease-modifying care can be run in parallel, such that patients do not miss opportunities for interventions that improve their quality of life.
英国慢性肝病的死亡率正在迅速上升，晚期肝病患者的症状负担与其他危及生命的疾病相当或更高。尽管证据有限，但人们越来越认识到需要改善对晚期疾病患者的护理。许多因素限制了为这些患者广泛提供优质的姑息治疗，包括慢性肝病难以预测的病程、认为姑息治疗和临终关怀是同义词的误解、对开具处方缺乏信心以及缺乏时间和资源。管理这些患者的医疗保健专业人员需要培养技能，以确保有效提供核心姑息治疗，将转诊至专科姑息治疗服务的对象限定为有复杂需求的患者。核心姑息治疗最好由肝病团队在积极管理疾病的同时提供。这包括确保在积极处理疾病并发症的同时，开展关于疾病病程和预先护理计划的讨论。肝病与患者及其护理人员面临的重大社会、心理和经济困难密切相关；在疾病病程早期让更广泛的多学科团队参与的策略有助于确保积极处理此类问题。本综述总结了支持对晚期慢性肝病患者进行姑息治疗的证据，列举了当前最佳实践的实例，并就如何并行开展姑息治疗和改善病情的治疗提出了切实可行的建议，以使患者不会错过改善生活质量的干预机会。
