a Department of Respiratory Medicine, Graduate School of Medicine , Kyoto University , Kyoto , Japan.
b Department of Respiratory Medicine , Japanese Red Cross Otsu Hospital , Otsu , Shiga , Japan.
COPD. 2019 Feb;16(1):75-81. doi: 10.1080/15412555.2019.1573888. Epub 2019 Feb 21.
Chronic obstructive pulmonary disease (COPD) is a leading cause of mortality. Since patients with severe COPD may experience exacerbations and eventually face mortality, advanced care planning (ACP) has been increasingly emphasized in the recent COPD guidelines. We conducted a multicenter, cross-sectional study to survey the current perspectives of Japanese COPD patients toward ACP. "High-risk" COPD patients and their attending physicians were consecutively recruited. The patients' family configurations, understanding of COPD pathophysiology, current end-of-life care communication with physicians and family members, and preferences for invasive life-sustaining treatments including mechanical ventilation (MV) and cardiopulmonary resuscitation (CPR) were evaluated using a custom-made, structured, self-administered questionnaire. Attending physicians were also interviewed, and we evaluated the patient-physician agreement. Among the 224 eligible "high-risk" patients, 162 participated. Half of the physicians (54.4%) thought they had communicated detailed information; however, only 19.4% of the COPD patients thought the physicians did so (κ score = 0.16). Less than 10% of patients wanted to receive invasive treatment (MV, 6.3% and CPR, 9.4%); interestingly, more than half marked their decision as "refer to the physician" (MV 42.5% and CPR 44.4%) or "refer to family" (MV, 13.8% and CPR, 14.4%). Patients with less knowledge of COPD were less likely to indicate that they had already made a decision. Although ACP is necessary to cope with severe COPD, Japanese "high-risk" COPD patients were unable to make a decision on their preferences for invasive treatments. Lack of disease knowledge and communication gaps between patients and physicians should be addressed as part of these patients' care.
慢性阻塞性肺疾病（COPD）是主要的死亡原因。由于严重 COPD 患者可能会经历加重并最终面临死亡，因此最近的 COPD 指南越来越强调高级医疗保健计划（ACP）。我们进行了一项多中心、横断面研究，以调查日本 COPD 患者对 ACP 的当前看法。连续招募了“高危”COPD 患者及其主治医生。使用定制的、结构化的、自我管理的问卷评估了患者的家庭结构、对 COPD 病理生理学的理解、当前与医生和家庭成员的临终关怀沟通以及对包括机械通气（MV）和心肺复苏（CPR）在内的侵入性生命维持治疗的偏好。还对主治医生进行了访谈，并评估了医患双方的意见是否一致。在 224 名符合条件的“高危”患者中，有 162 名患者参与了调查。一半的医生（54.4%）认为他们已经进行了详细的信息沟通；然而，只有 19.4%的 COPD 患者认为医生这样做了（κ 评分=0.16）。不到 10%的患者希望接受侵入性治疗（MV 为 6.3%，CPR 为 9.4%）；有趣的是，超过一半的患者选择将决定“交由医生决定”（MV 为 42.5%，CPR 为 44.4%）或“交由家人决定”（MV 为 13.8%，CPR 为 14.4%）。对 COPD 了解较少的患者不太可能表示他们已经做出了决定。尽管 ACP 对于应对严重 COPD 是必要的，但日本的“高危”COPD 患者无法对他们对侵入性治疗的偏好做出决定。应该解决疾病知识不足和医患之间沟通不畅的问题，这是这些患者护理的一部分。
