Pomej Katharina, Masel Eva Katharina, Kreye Gudrun
Division of Gastroenterology and Hepatology, Department of Medicine III, Medical University of Vienna, Vienna, Austria.
Division of Palliative Medicine, Department of Medicine I, Medical University of Vienna, Vienna, Austria.
Wien Klin Wochenschr. 2024 Sep 10. doi: 10.1007/s00508-024-02436-z.
While mortality rates from advanced chronic liver disease (ACLD) are rapidly increasing, patients with an advanced disease stage have a comparable or even higher symptom burden than those with other life-limiting diseases. Although evidence is limited there is increasing recognition of the need to improve care for patients with ACLD; however, there are many limiting factors to providing good palliative care for these patients, including unpredictable disease progression, the misconception of palliative care and end of life care as being equivalent, a lack of confidence in prescribing medication and a lack of time and resources. Health professionals working with these patients need to develop the skills to ensure effective palliative care, while referral to specialized palliative care centers should be reserved for patients with complex needs. Basic palliative care, along with active disease management, is best delivered by the treating hepatologists. This includes discussions about disease progression and advance care planning, alongside the active management of disease complications. Liver disease is closely associated with significant social, psychological, and financial burdens for patients and their caregivers. Strategies to engage the discussion in multidisciplinary teams early in disease progression help to ensure addressing these issues proactively. This review summarizes the evidence on palliative care for patients with ACLD, provides examples of current best practice and offers suggestions on how disease-modifying and palliative care can coexist, to ensure that patients do not miss opportunities for quality of life improving interventions.
尽管晚期慢性肝病（ACLD）的死亡率正在迅速上升，但疾病晚期患者的症状负担与其他危及生命的疾病患者相当，甚至更高。虽然证据有限，但人们越来越认识到需要改善对ACLD患者的护理；然而，为这些患者提供良好的姑息治疗存在许多限制因素，包括不可预测的疾病进展、将姑息治疗和临终关怀误解为等同、对开药缺乏信心以及缺乏时间和资源。与这些患者打交道的卫生专业人员需要培养技能以确保有效的姑息治疗，而对于有复杂需求的患者应转诊至专门的姑息治疗中心。基础姑息治疗与积极的疾病管理最好由主治肝病专家提供。这包括关于疾病进展和预先护理计划的讨论，以及对疾病并发症的积极管理。肝病与患者及其护理人员的重大社会、心理和经济负担密切相关。在疾病进展早期就让多学科团队参与讨论的策略有助于确保积极解决这些问题。本综述总结了关于ACLD患者姑息治疗的证据，提供了当前最佳实践的示例，并就疾病改善治疗和姑息治疗如何共存提出了建议，以确保患者不会错过改善生活质量干预措施的机会。
