Division of Gastroenterology, Department of Medicine, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada.
Division of General Internal Medicine and Palliative Care, Department of Medicine, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada.
Clin Gastroenterol Hepatol. 2014 Apr;12(4):692-8. doi: 10.1016/j.cgh.2013.08.027. Epub 2013 Aug 24.
BACKGROUND & AIMS: Patients with cirrhosis who are receiving palliative care and are not eligible for liver transplantation (LT) are often hospitalized multiple times, with lack of expectations or understanding of death and dying. We evaluated how frequently these patients received appropriate and palliative care.
We performed a retrospective study of 102 consecutive adult patients (67% men; mean age, 55 years) who were removed from the list for or declined LT from January 2005 through December 2010 at the University of Alberta, Canada. Patients' medical records were reviewed to determine their access to palliative care and relief of symptoms, the appropriateness of the goals for their care, and their requirements for acute care services.
The patients' median Model for End-stage Liver Disease score was 20, and median time from denial of LT to death was 52 days (range, 10-332 days). The most common reasons that patients were removed from the transplant wait list were noncompliance or substance abuse (26%) and severe illness or organ dysfunction (25%). After patients were removed from the list, 17% received renal replacement therapy, and 48% were subsequently admitted to the intensive care unit. Patients spent a median of 14 days (range, 6-33 days) in the hospital after they were removed from the transplant wait list. On the basis of the Edmonton Symptom Assessment System, 65% of patients had evidence of pain, 58% had evidence of nausea, 10% had depression, 36% had anxiety, 48% had dyspnea, and 49% had symptoms of anorexia. Twenty-eight percent of all the patients had documentation of do not resuscitate status on their charts, and only 11% were referred for palliative care.
Patients with cirrhosis who have been removed from the wait list for LT are infrequently referred for palliative care (∼ 10% of cases), although a high percentage have pain or nausea. Goals of care and do not resuscitate status are rarely discussed. Improved planning of goals of care and access to palliative services are required for these patients.
接受姑息治疗且不符合肝移植 (LT) 条件的肝硬化患者经常多次住院，他们对死亡和濒死缺乏期望或认识。我们评估了这些患者接受适当姑息治疗的频率。
我们对 2005 年 1 月至 2010 年 12 月期间在加拿大阿尔伯塔大学被从 LT 名单中删除或拒绝 LT 的 102 例连续成年患者（67%为男性；平均年龄 55 岁）进行了回顾性研究。回顾患者病历以确定他们获得姑息治疗和缓解症状的情况、其治疗目标的适当性以及他们对急性护理服务的需求。
患者的中位终末期肝病模型评分 20 分，从 LT 拒绝到死亡的中位时间为 52 天（范围，10-332 天）。患者从移植等待名单中删除的最常见原因是不遵守规定或滥用药物（26%）和严重疾病或器官功能障碍（25%）。从名单中删除后，17%的患者接受了肾脏替代治疗，48%的患者随后入住重症监护病房。患者从移植等待名单中删除后，平均住院 14 天（范围，6-33 天）。根据埃德蒙顿症状评估系统，65%的患者有疼痛证据，58%的患者有恶心证据，10%的患者有抑郁，36%的患者有焦虑，48%的患者有呼吸困难，49%的患者有厌食症状。所有患者中有 28%的患者在病历中记录了不复苏状态，只有 11%的患者被转介接受姑息治疗。
被从 LT 等待名单中删除的肝硬化患者很少被转介接受姑息治疗（约 10%的病例），尽管有很大比例的患者有疼痛或恶心。很少讨论治疗目标和不复苏状态。这些患者需要更好地规划治疗目标和获得姑息治疗服务。
