Using the experiences of bereaved caregivers to inform patient- and caregiver-centered advance care planning
Using the experiences of bereaved caregivers to inform patient- and caregiver-centered advance care planning
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DOI：
10.1007/s11606-008-0748-0
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发表时间：
2008-10-01
影响因子：
5.7
通讯作者：
O'Leary, John R.
中科院分区：
文献类型：
--
作者：
Fried, Terri R.;O'Leary, John R.
背景：传统的预先护理计划（ACP）方法有许多局限性；为了改善临终关怀，正在开发新的方法。目的：了解老年患者及其护理人员的临终关怀经历如何为ACP新方法的发展提供信息。设计：定性横断面研究。参与者：在一项纵向研究中，在随访期间死于晚期癌症、慢性阻塞性肺疾病或心力衰竭的60岁社区居民的照顾者。方法：在患者死亡6个月后与64名护理人员进行深入访谈。访谈以开放式问题开始，鼓励护理人员讲述病人临终时的经历。其他问题包括如何做出决定、患者-护理者、患者-临床医生以及护理者-临床医生之间的沟通。主要结果：虽然护理人员叙述的经历是高度个性化的，但从访谈中出现了几个共同的主题。这些因素包括：1)某些患者缺乏可用的治疗选择，促使患者和护理人员考虑更广泛的临终问题；2)疾病末期偏好的变化；3)患者和护理人员对听取患者疾病信息的愿望和准备程度的变化；4)患者与护理人员沟通的困难。讨论：老年临终患者及其护理人员的经验支持ACP的形式，它包括比单独的治疗决策更广泛的问题，认识到偏好的动态性质，并着重于解决患者与护理人员沟通的障碍。
BACKGROUND: Traditional approaches to advance care planning (ACP) have many limitations; new approaches are being developed with the goal of improving end-of-life care.OBJECTIVE: To understand how the end-of-life care experiences of older patients and their caregivers can inform the development of new approaches to ACP.DESIGN: Qualitative cross-sectional study.PARTICIPANTS: Caregivers of community-dwelling persons age >= 60 years who died with advanced cancer, chronic obstructive pulmonary disease, or heart failure during follow-up in a longitudinal study.APPROACH: In-depth interviews were conducted 6 months after the patient's death with 64 caregivers. Interviews began with open-ended questions to encourage the caregiver to tell the story of the patient's experiences at the end of life. Additional questions asked about how decisions were made, patient-caregiver, patient-clinician, and caregiver-clinician communication.MAIN RESULTS: Although the experiences recounted by caregivers were highly individual, several common themes emerged from the interviews. These included the following: 1) the lack of availability of treatment options for certain patients, prompting patients and caregivers to consider broader end-of-life issues, 2) changes in preferences at the very end of an illness, 3) variability in patient and caregiver desire for and readiness to hear information about the patient's illness, and 4) difficulties with patient-caregiver communication.DISCUSSION: The experiences of older patients at the end of life and their caregivers support a form of ACP that includes a broader set of issues than treatment decision-making alone, recognizes the dynamic nature of preferences, and focuses on addressing barriers to patient-caregiver communication.