Department of Anesthesiology, Pain and Palliative Medicine, Radboud University Medical Center, Geert Grooteplein Zuid 10, Nijmegen, 6525 GA, the Netherlands.
Med Health Care Philos. 2024 Dec;27(4):555-566. doi: 10.1007/s11019-024-10228-5. Epub 2024 Oct 5.
Especially older adults are increasingly stimulated to think about, talk about and record their preferences with regard to future (health)care decisions, preferably in a pro-active manner. In this paper, I analyse these anticipatory choice processes. My goal is twofold: Firstly, to provide a deeper understanding of what it actually means to decide in advance about end-of-life treatments or options. Secondly, to make a theoretical contribution to bioethics and ACP-theories by rethinking the concept of end-of-life choices from a phenomenological viewpoint. To achieve this, I start by presenting a case narrative that elucidates how these anticipatory choices are lived. Secondly, I map out a theoretical framework about choice based on the phenomenology of the will of Paul Ricoeur. Finally, guided by this Ricoeurian framework, I investigate the potential meaning of choice in the context of contemporary advance care planning trajectories. The analysis demonstrates that choice and agency always imply notions of passivity and uncontrollability. It also indicates the significant value of hesitation and ambivalence. Moreover, it highlights the importance of the notion of co-responsibility in the context of anticipated end-of-life choices, and the relevant distinction between a (willed) choice and a wish. To improve care and support regarding end-of-life trajectories and to promote meaningful conversations, it is imperative to integrate these underrated elements more substantially in our theories, language and practical approaches. I conclude by suggesting that, in order to do justice to the real-life complexities, we might even need to revise the notion of advance 'directives'.
特别是老年人越来越多地被激励去思考、讨论和记录他们对未来（健康）护理决策的偏好，最好是积极主动地去做。在本文中，我分析了这些预期的选择过程。我的目标有两个：首先，更深入地了解提前决定生命末期治疗或选择的实际含义。其次，通过从现象学的角度重新思考生命末期选择的概念，为生物伦理学和ACP 理论做出理论贡献。为了实现这一目标，我首先呈现了一个案例叙述，阐明了这些预期的选择是如何被体验的。其次，我基于保罗·利科的意志现象学构建了一个关于选择的理论框架。最后，在这个利科框架的指导下，我研究了在当代预先护理规划轨迹中选择的潜在意义。分析表明，选择和能动性总是隐含着被动性和不可控性的概念。它还表明了犹豫和矛盾的重要价值。此外，它强调了在预期生命末期选择的背景下共同责任的概念的重要性，以及（意愿）选择和愿望之间的相关区别。为了改善生命末期轨迹的护理和支持，并促进有意义的对话，我们必须在我们的理论、语言和实践方法中更实质性地纳入这些被低估的元素。最后，我建议为了公正地对待现实生活的复杂性，我们甚至可能需要修改预先的“指令”的概念。
