Department of Medicine, University of Alberta, Alberta, Canada.
Clin J Am Soc Nephrol. 2010 Feb;5(2):195-204. doi: 10.2215/CJN.05960809. Epub 2010 Jan 14.
Despite high mortality rates, surprisingly little research has been done to study chronic kidney disease (CKD) patients' preferences for end-of-life care. The objective of this study was to evaluate end-of-life care preferences of CKD patients to help identify gaps between current end-of-life care practice and patients' preferences and to help prioritize and guide future innovation in end-of-life care policy.
DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: A total of 584 stage 4 and stage 5 CKD patients were surveyed as they presented to dialysis, transplantation, or predialysis clinics in a Canadian, university-based renal program between January and April 2008.
Participants reported relying on the nephrology staff for extensive end-of- life care needs not currently systematically integrated into their renal care, such as pain and symptom management, advance care planning, and psychosocial and spiritual support. Participants also had poor self-reported knowledge of palliative care options and of their illness trajectory. A total of 61% of patients regretted their decision to start dialysis. More patients wanted to die at home (36.1%) or in an inpatient hospice (28.8%) compared with in a hospital (27.4%). Less than 10% of patients reported having had a discussion about end-of-life care issues with their nephrologist in the past 12 months.
Current end-of-life clinical practices do not meet the needs of patients with advanced CKD.
尽管死亡率居高不下，但令人惊讶的是，针对慢性肾脏病（CKD）患者对终末期护理偏好的研究却很少。本研究旨在评估 CKD 患者对终末期护理的偏好，以帮助发现当前终末期护理实践与患者偏好之间的差距，并帮助确定终末期护理政策的优先事项和指导未来的创新。
设计、地点、参与者和测量：2008 年 1 月至 4 月期间，共有 584 名 4 期和 5 期 CKD 患者在加拿大一所大学肾脏项目的透析、移植或透析前诊所就诊时接受了调查。
参与者报告称，他们依赖肾病科工作人员来满足广泛的终末期护理需求，但这些需求目前并未系统地纳入他们的肾脏护理中，例如疼痛和症状管理、预先护理计划以及心理社会和精神支持。参与者对姑息治疗选择和疾病轨迹的自我报告知识也很差。共有 61%的患者对开始透析的决定感到后悔。与在医院（27.4%）相比，更多的患者希望在家（36.1%）或住院临终关怀（28.8%）中去世。不到 10%的患者报告在过去 12 个月内与肾病学家讨论过终末期护理问题。
目前的终末期临床实践不能满足晚期 CKD 患者的需求。
