Netherlands Institute of Health Services Research (NIVEL), Utrecht, The Netherlands.
Maasveld, Koraalgroep, Maastricht, The Netherlands; Expertise Centre for Palliative Care, Maastricht University Medical Centre, Maastricht, The Netherlands.
J Pain Symptom Manage. 2017 Dec;54(6):938-960.e1. doi: 10.1016/j.jpainsymman.2017.04.016. Epub 2017 Aug 8.
Advance care planning (ACP) is defined as a person-centered, ongoing process of communication that facilitates patients' understanding, reflection, and discussion of goals, values, and preferences for future care. There is evidence for the general palliative care population that ACP increases compliance with patients' end-of-life preferences and improves quality of care near the end of life.
To gain insight into what is known about the use and effects of ACP in palliative care for people with intellectual disabilities (IDs).
Four databases were searched systematically: PubMed, PsycINFO, Embase, and CINAHL. A stepwise procedure was used to identify relevant studies based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement. The review included empirical quantitative, qualitative, and mixed methods studies concerning people with ID who receive palliative care or who died non-acutely, and describing ACP. Methodological quality was graded using a critical appraisal tool.
A total of 14 studies were included. Most studies examined the perspective of professionals and/or relatives. None of the studies focused on the perspective of patients with ID. The studies concerned different elements of ACP, mainly decision-making and organizational policies. No effect studies were found. Obstructing factors were difficulties in recognizing palliative needs and uncertainties among relatives and professionals about their roles and tasks in ACP. Conducive factors were good working relationships between professionals and relatives.
There are some indications that ACP could be useful for people with ID, but more knowledge is needed about whether and how ACP should be used.
预先医疗指示（ACP）被定义为一个以患者为中心、持续进行的沟通过程，旨在促进患者对未来医疗的目标、价值观和偏好的理解、反思和讨论。有证据表明，对于一般的姑息治疗人群，ACP 可以提高患者对临终偏好的遵从性，并改善生命末期的护理质量。
深入了解在智力障碍（ID）人群的姑息治疗中使用 ACP 及其效果的相关知识。
系统地检索了四个数据库：PubMed、PsycINFO、Embase 和 CINAHL。根据系统评价和荟萃分析报告的首选报告项目，采用逐步程序来确定相关研究。该综述包括有关接受姑息治疗或非急性死亡的 ID 患者以及描述 ACP 的实证定量、定性和混合方法研究。使用批判性评价工具对方法学质量进行了分级。
共纳入了 14 项研究。大多数研究考察了专业人员和/或亲属的观点。没有一项研究关注 ID 患者的观点。这些研究涉及 ACP 的不同方面，主要是决策和组织政策。没有发现效果研究。阻碍因素包括难以识别姑息治疗的需求，以及亲属和专业人员对其在 ACP 中的角色和任务的不确定性。有利因素是专业人员和亲属之间良好的工作关系。
有一些迹象表明 ACP 对 ID 患者可能有用，但需要更多关于 ACP 是否以及如何使用的知识。
