A "good death" with irreversible liver disease: Talking with patients and families about deteriorating health and dying.
A "good death" with irreversible liver disease: Talking with patients and families about deteriorating health and dying.
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不可逆肝病的“美好死亡”：与患者和家属谈论健康状况恶化和死亡。
DOI：
10.1002/cld.479
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发表时间：
2015
影响因子：
--
通讯作者：
Boyd K
中科院分区：
文献类型：
--
作者：
Boyd K
不可逆的晚期肝病患者及其家人生活在一种复杂而具有挑战性的疾病中，这种疾病遵循高度不可预测的疾病轨迹。随着健康状况的恶化，患者往往会出现衰弱症状、心理压力、家庭担忧、经济问题、社会耻辱和生存压力。此外，还有随时存在的急性、危及生命的并发症威胁。对这些发作性失代偿的治疗会导致反复住院，并难以决定患者可能选择如何和在何处死亡。肝移植可以挽救生命，但患者必须“病得要死”才能被纳入移植名单。然后，病人和他们的家人不得不面对他们是否能够接受移植并存活，或者实际上会死亡的不确定性。那么，我们如何处理这些最具挑战性的临终决策，以确保我们的患者在接受整体姑息治疗的同时接受高质量的治疗干预，并关注患者和家庭目标和价值观的演变？当患者可能在失代偿期突然发作期间迅速死亡或因脑病或严重疾病而失去决策能力时，及时的未来护理计划尤为重要。等到所有的治疗方案都试过了，病人接近死亡是“预后性瘫痪”;一种常见但可以避免的情况。第一步是及早识别健康状况正在恶化的病人，使他们在可预见的将来有死亡的危险。已建议采取若干办法。最简单的是直观的“惊喜”，临床医生或团队问自己，如果这个病人在未来6 - 12个月内死亡，是否会感到惊讶。3这在具有相当可预测的轨迹的疾病中效果最好，例如某些类型的癌症，但在晚期肝病中效果较差，因为其固有的不可预测性。死亡风险预测工具，如终末期肝病模型评分系统，广泛用于决定移植资格，并表明预期寿命较短。4顽固性症状、晚期肝硬化体征（如脑病或复发性静脉曲张出血）和肝细胞癌是姑息治疗需求评估的临床指标。开始谈论提前计划可以与整体护理的其他方面一起进行，如症状控制，心理支持和家庭护理。晚期肝病患者在失代偿发作之间可能会有合理的表现状态，因此这往往不如复发性住院作为一个指标。合并症增加了疾病负担，也应该促使早期引入姑息治疗方法。使用疾病特异性指标和健康状况恶化和死亡风险的一般临床指标，有助于临床医生识别晚期肝病患者，这些患者可以从进一步评估和对话中受益，了解随着健康状况恶化对他们来说什么是重要的（见图1中的“临床指标”）。5然而，只有当照顾这些患者的临床医生能够与他们讨论这一点时，识别优先事项可能发生变化的不可逆肝病患者才有价值，然后将优秀的以疾病为中心的管理与姑息治疗方法相结合，
Patients with irreversible, advanced liver disease and their families live with a complex and challenging condition that follows a highly unpredictable illness trajectory. As their health deteriorates, patients often experience debilitating symptoms, psychological stress, family worries, financial problems, social stigma, and existential distress. In addition, there is the ever-present threat of acute, life-threatening complications. 1 Treatment of these episodic decompensations leads to recurrent hospitalizations and difficult decisions about how and where a patient might choose to die. Liver transplantation can be life-saving, but patients have to be ‘‘sick enough to die’’to be accepted onto a transplant list. 2 Then, patients and their families have to cope with the uncertainty of whether they will ever be able to receive a transplant and live, or will in fact die. So, how do we handle these most challenging end-of-life decisions in ways that ensure our patients receive high-quality, therapeutic interventions alongside holistic palliative care and also pay attention to evolving patient and family goals and values? Timely future care planning is particularly important when patients may die rapidly during a sudden episode of decompensation or lose decision-making capacity due to encephalopathy or severe illness. Waiting until all treatment options have been tried and the patient is close to death is ‘‘prognostic paralysis’’; a common but avoidable situation. The first step is earlier identification of patients whose health is deteriorating such that they are at risk of dying within the foreseeable future. Several approaches have been recommended. The simplest is the intuitive ‘‘Surprise Question’’where a clinician or team ask themselves if it would be a surprise if this patient were to die in the next 6–12 months. 3 This works best in illnesses with fairly predictable trajectories such as some types of cancer, but much less well in advanced liver disease because of its inherently unpredictable course. Mortality risk prediction tools, such as the Model for End-Stage Liver Disease scoring system, are used widely in deciding about transplant eligibility and indicate a short life expectancy. 4 Intractable symptoms, signs of advanced cirrhosis such as encephalopathy or recurrent variceal bleeds, and hepatocellular carcinoma are clinical indicators for a palliative care needs assessment. Starting to talk about planning ahead can happen alongside other aspects of holistic care such as symptom control, psychological support, and family care. People with advanced liver disease may have a reasonable performance status between episodes of decompensation, so this tends to be less helpful as an indicator than recurrent hospitalizations. Comorbidities add to the illness burden and should also prompt the early introduction of a palliative care approach. Using disease-specific indicators and general clinical indicators of deteriorating health and risk of dying helps clinicians identify patients with advanced liver disease who could benefit from further assessment and conversations about what matters to them as their health deteriorates (see ‘‘Clinical Indicators’’in Fig. 1). 5However, identifying patients with irreversible liver disease whose priorities may be changing is only of value if the clinicians caring for these patients are able to discuss this with them, and then integrate excellent disease-focused management with a palliative care approach that gives as