Institute of Family Practice, Medical Faculty, University of Duisburg-Essen, Essen, Germany.
Institute of Humanities in Medicine, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland.
J Am Geriatr Soc. 2021 Aug;69(8):2122-2131. doi: 10.1111/jgs.17147. Epub 2021 May 5.
Legally recognized advance directives (ADs) have to be signed by the person to whom the decisions apply. In practice, however, there are also ADs written and signed by legal proxies (surrogates) on behalf of patients who lack decision-making capacity. Given their practical relevance and substantial ethical and legal implications, ADs by proxy (AD-Ps) have received surprisingly little scientific attention so far.
To study the form, content, validity, and applicability of AD-Ps among German nursing home residents and develop policy implications.
Secondary analysis of two independent cross-sectional studies in three German cities, comprising 21 nursing homes and 1528 residents. The identified AD-Ps were analyzed in parallel by three independent raters. Inter-rater agreement was measured using free-marginal multi-rater kappa statistics.
Altogether, 46 AD-Ps were identified and pooled for analysis. On average (range), AD-Ps were 1 (1-7) year(s) old, 0.5 (0.25-4) pages long, signed by 1 (0-5) person, with evidence of legal proxy involvement in 35%, and signed by a physician in 20% of cases. Almost all the AD-Ps reviewed aimed to limit life-sustaining treatment (LST), but had widely varying content and ethical justifications, including references to earlier statements (30%) or actual behavior (11%). The most frequent explicit directives were: do-not-hospitalize (67%), do-not-tube-feed (37%), do-not-attempt-resuscitation (20%), and the general exclusion of any LST (28%). Inter-rater agreement was mostly moderate (kappa ≥0.6) or strong (kappa ≥0.8).
Although AD-Ps are an empirical reality in German nursing homes, formal standards for such directives are lacking and their ethical justification based on substituted judgment or best interest standard often remains unclear. A qualified advance care planning process and corresponding documentation are required in order to safeguard the appropriate use of this important instrument and ensure adherence to ethico-legal standards.
法律认可的预先指示（AD）必须由决策适用对象签署。然而，在实践中，也有由缺乏决策能力的患者的法定代理人（代理人）代表患者书写和签署的 AD。鉴于其实际相关性以及重大的伦理和法律影响，迄今为止，代理人 AD（AD-P）几乎没有受到科学界的关注。
研究德国养老院居民 AD-P 的形式、内容、有效性和适用性，并制定相关政策。
对三个德国城市的两项独立横断面研究进行二次分析，共纳入 21 家养老院和 1528 名居民。由三名独立的评估人员同时分析确定的 AD-P。使用自由边际多评估者 κ 统计量测量评估者间的一致性。
共确定并汇总了 46 份 AD-P 进行分析。AD-P 的平均（范围）年龄为 1（1-7）岁，长度为 0.5（0.25-4）页，由 1（0-5）人签署，有 35%的证据表明涉及法律代理人，20%的情况由医生签署。审查的几乎所有 AD-P 都旨在限制维持生命的治疗（LST），但内容和伦理依据差异很大，包括提及先前的声明（30%）或实际行为（11%）。最常见的明确指令是：不入院（67%）、不鼻饲（37%）、不尝试复苏（20%）以及一般排除任何 LST（28%）。评估者间的一致性大多为中度（κ≥0.6）或高度（κ≥0.8）。
尽管 AD-P 是德国养老院的现实情况，但此类指令缺乏正式标准，其基于替代判断或最佳利益标准的伦理依据往往不明确。为了确保适当使用这一重要工具并遵守伦理法律标准，需要进行有资质的预先护理计划制定和相应的文件记录。
