Birchley Giles
While, in Europe and beyond, decisions about children who lack competence to contribute to their treatment decisions are based upon their best interests, both the European Court of Human Rights and bioethical theorists consider that there must be substantial involvement of parents in these decisions. In the United Kingdom (UK), legal and clinical guidelines say that critically ill children’s best interests must be agreed by their parents and doctors, or the courts, in a process of shared decision-making. There is widespread acceptance that there should be limitations on parental authority in shared decisions, yet parental authority is ill-defined, and without some agreement on the source of parental authority it is difficult to limit it either cogently or consistently. This chapter presents results from an empirical ethics investigation into shared decision-making in the paediatric intensive care unit, a study that focused on critical decisions in which an infant child’s treatment or non-treatment would be decided. While many of the parents involved expressed their views about their child’s best interests as an intuition, this intuition was generally based on their knowledge, emotional intimacy and close proximity to their child. However, in some circumstances such intuition appeared to have no basis in fact or experience, and this was notably the case for the intuitions parents said they would rely upon to make critical decisions about treatment at the end of life. A combination of knowledge, emotional connection, intimacy and intuition also saw many parents actively contribute to decision-making and frequently request treatments for their child. I use intuition here to characterise an instinctive sense that something is the case – what is sometimes termed a ‘gut instinct’. Normative accounts of intuition, which I will discuss in this chapter, are divided about the basis and the value of intuitions, but not the definition; as McMahan puts it, moral intuition is a ‘spontaneous moral judgement’ (2000: 93). The study results allow us to glimpse a rich picture of the sources of parental authority, and thus offer the cogent reasons we need in order to place consistent limits on the scope of parental authority in shared decisions. I contend that parental authority can have a basis in intuition, which should be based upon tangible, intimate knowledge of their child, their child’s therapy and their child’s medical history; however I suggest that, without this basis, parental intuition alone should not be authoritative. I accept that requests for treatment may communicate such knowledge and thus be useful for raising the quality of care. However, I observe that such requests may also have a deleterious effect on other children within the clinical setting because of the physical limitations of resources and the varying abilities of parents as advocates. For these reasons, while I argue there are strong reasons to involve in decisions about their children parents who are (in ways I explore) close to their offspring, I suggest there are defensible, definable and consistent limits to the exercise of parental authority in shared decisions.
在欧洲及其他地区，对于缺乏参与治疗决策能力的儿童所做的决定是基于他们的最大利益，欧洲人权法院和生物伦理学家都认为，父母必须在这些决定中大量参与。在英国，法律和临床指南规定，重症儿童的最大利益必须由其父母和医生或法院在共同决策过程中达成一致。人们普遍认为，在共同决策中应限制父母的权威，但父母权威的定义不明确，而且在父母权威的来源没有达成某种共识的情况下，很难有说服力或始终如一地对其进行限制。本章展示了一项关于儿科重症监护病房共同决策的实证伦理调查结果，该研究聚焦于决定婴幼儿治疗或不治疗的关键决策。虽然许多参与的父母将他们对孩子最大利益的看法表达为一种直觉，但这种直觉通常基于他们对孩子的了解、情感亲密关系以及与孩子的密切接触。然而，在某些情况下，这种直觉似乎没有事实或经验依据，对于父母表示他们在做出关于临终治疗的关键决策时会依赖的直觉尤其如此。知识、情感联系、亲密关系和直觉的结合也使许多父母积极参与决策，并经常为孩子要求治疗。我在这里用直觉来描述一种本能地感觉某件事是这样的——有时被称为“直觉本能”。关于直觉的规范性解释，我将在本章中讨论，它们在直觉的基础和价值上存在分歧，但在定义上没有分歧；正如麦克马汉所说，道德直觉是一种“自发的道德判断”（2000：93）。研究结果让我们得以瞥见父母权威来源的丰富图景，从而提供我们为在共同决策中始终如一地限制父母权威范围所需的有说服力的理由。我认为父母权威可以基于直觉，而这种直觉应该基于对他们孩子、孩子的治疗以及孩子病史的切实、亲密的了解；然而我建议，如果没有这个基础，仅父母的直觉不应具有权威性。我承认对治疗的要求可能传达了这样的知识，因此有助于提高护理质量。然而，我观察到，由于资源的物理限制以及父母作为倡导者的不同能力，这种要求在临床环境中也可能对其他儿童产生有害影响。出于这些原因，虽然我认为有充分理由让与孩子亲近的父母（以我探讨的方式）参与关于他们孩子的决策，但我建议在共同决策中行使父母权威存在可辩护、可定义和一致的限制。
