Davison Sara N
Department of Medicine, Division of Nephrology and Immunology, University of Alberta, Edmonton, Alberta, Canada.
Clin J Am Soc Nephrol. 2006 Sep;1(5):1023-8. doi: 10.2215/CJN.01050306. Epub 2006 Aug 2.
Comprehensive care of patients with ESRD requires expertise in advance care planning (ACP), including attention to ethical, psychosocial, and spiritual issues related to starting, continuing, withholding, and stopping dialysis. However, there are no standards of care regarding when to initiate or how to facilitate ACP. The purpose of this study was to determine the perspectives of patients with ESRD of the salient elements of ACP discussions. An ethnographic, qualitative, in-depth interview study was conducted of outpatients of a university-affiliated nephrology program. Twenty-four patients with ESRD were purposively selected from the renal insufficiency, hemodialysis, and peritoneal dialysis clinics. Establishing patient "buy-in" by identifying perceived benefits of ACP along with acknowledging patients' sense of personal empowerment were critical both for the effective framing of facilitated ACP and for determining patients' ability to participate in facilitated ACP. Patients required more information and earlier initiation of ACP discussions. Information needed to focus more on the individual and how his or her illness and interventions would affect his or her life and relationships and what he or she values most. Empathetic listening also was viewed as an integral component of facilitated ACP. Physicians clearly were seen as having the responsibility for initiating and guiding ACP. The role of patients and family within ACP is complex and varies significantly between patients. For most, family was an integral component of ACP, and many relied extensively on family to make end-of-life decisions. These findings identify a precarious tension between patients' preferences in terms of facilitated ACP and current clinical practice.
对终末期肾病（ESRD）患者的综合护理需要提前护理规划（ACP）方面的专业知识，包括关注与开始、继续、停止和终止透析相关的伦理、心理社会和精神问题。然而，关于何时启动或如何推动提前护理规划，尚无护理标准。本研究的目的是确定终末期肾病患者对提前护理规划讨论中关键要素的看法。对一所大学附属医院肾脏病项目的门诊患者进行了一项人种志定性深入访谈研究。从肾功能不全、血液透析和腹膜透析诊所中有意选取了24名终末期肾病患者。通过确定提前护理规划的预期益处以及认可患者的个人赋权感来获得患者的“认同”，这对于有效构建推动提前护理规划以及确定患者参与推动提前护理规划的能力都至关重要。患者需要更多信息并更早开始提前护理规划讨论。所需信息应更多地聚焦于个体，以及其疾病和干预措施将如何影响其生活和人际关系，以及其最看重的东西。共情倾听也被视为推动提前护理规划的一个不可或缺的组成部分。显然，医生被视为有责任启动和指导提前护理规划。患者及其家属在提前护理规划中的角色很复杂，且患者之间差异很大。对大多数人来说，家属是提前护理规划的一个不可或缺的组成部分，许多人在很大程度上依赖家属来做出临终决定。这些发现揭示了患者在推动提前护理规划方面的偏好与当前临床实践之间的不稳定矛盾。
