Towards a European understanding of advance decision-making: a comparative, interdisciplinary approach.

走向欧洲对预先决策的理解：比较、跨学科的方法。

• 批准号: ES/M002659/2
• 负责人: Samantha Halliday
• 金额: $ 0.57万
• 依托单位: University of Huddersfield
• 依托单位国家: 英国
• 项目类别: Research Grant
• 财政年份: 2018
• 资助国家: 英国
• 起止时间: 2018 至 无数据
• 项目状态: 已结题
• 来源: https://gtr.ukri.org/projects?ref=ES%2FM002659%2F2
• 关键词: Towards; European; understanding; advance; decision

The principle of patient autonomy emphasises respect for the patient as an individual, rather than as an object of concern; attempts to promote precedent autonomy aim to extend that respect to those no longer capable of exercising autonomy and so to prioritise the patient's wishes over her welfare as assessed by third parties. Advance decisions/directives (ADs) enable individuals to make choices during times of capacity that will take effect in the future when the individual lacks the capacity to make a contemporaneous decision. Advance medical decision-making occurs in a range of situations, encompassing decisions relating to end-of-life treatment, typically focussed upon refusals of life-sustaining treatment; ADs concerning physical health care unrelated to end of life care, including for example birth plans which typically include positive requests for treatments (e.g. an epidural) as well as refusals of treatment; and ADs relating to psychiatric treatment, where individuals with severe mental illness set out their treatment preferences. In each of these situations an AD can act as an important mechanism for conveying precedent autonomy, bridging the occurrence of incapacity and providing a clear statement of how the patient wants to be treated, or more usually what treatment the patient does not wish to be given.Anticipatory decision-making offers great promise and could make a substantial contribution to the empowerment of those lacking capacity, but there are important asymmetries between anticipatory and contemporaneous decision-making that could potentially undermine both the legal and moral authority of an AD. An AD is a mono-directional form of communication that takes effect only once the patient lacks capacity and is therefore no longer able to discuss alternative treatment and care options, to clarify her wishes, or potentially to rescind her previously expressed wishes. Significant problems occur because, unlike contemporaneous decisions, ADs are intended to take effect at a future time when the range of treatment scenarios and treatment that will be available may have changed, or the individual's interests may be radically and unforeseeably different from those anticipated. Moreover, practical problems may arise, including how to ensure that the AD was voluntary and that the individual had the requisite capacity to make it. Such problems are inextricably linked to the temporal and psychological distance that separates the AD from the time at which it should be implemented, but ADs also call into question the interplay between society's interest in upholding the sanctity of life and the patient's right to self-determination. As a result, ADs are usually subjected to stringent validity and applicability requirements, requirements that typically give significant discretion to the healthcare professional charged with implementing the AD to determine whether or not the AD is binding in the treatment scenario that occurs.The Council of Europe's Convention on Human Rights and Biomedicine (1997) requires that account is taken of a patient's previously expressed wishes (Article 9), demanding at least a minimal consideration of precedent autonomy. A number of European jurisdictions have gone further, seeking to clarify the standing of ADs and to promote legal certainty by providing statutory recognition of the importance and binding nature of at least some ADs.This seminar series will consider a range of European legislative responses to anticipatory decision-making, seeking to explore those responses within the practical contexts within which advance decision-making occurs. It will link legal discourse with policy and practice discourses, and consider how a shared understanding of the purpose and potential for anticipatory decision-making may facilitate the drafting of ADs that both reflect the author's intentions and are likely to be capable of implementation by healthcare professionals at a later date.

患者自主原则强调尊重患者作为个人，而不是作为关注的对象；促进先例自主的努力旨在将这种尊重扩展到那些不再有能力行使自主的人，从而将患者的意愿置于第三方评估的患者福利之上。预先决定/指示(ADS)使个人能够在能力时期作出选择，这些选择将在未来个人缺乏同时作出决定的能力时生效。提前医疗决策发生在一系列情况下，包括与临终治疗有关的决定，通常侧重于拒绝维持生命的治疗；关于与临终关怀无关的身体保健的广告，例如包括生育计划，其中通常包括积极的治疗请求(例如硬膜外麻醉)以及拒绝治疗；以及与精神治疗有关的广告，在广告中，患有严重精神疾病的人列出了他们的治疗偏好。在每一种情况下，AD都可以作为传达先例自主权的重要机制，将丧失工作能力的发生联系起来，并提供患者希望如何治疗的明确声明，或者更常见的情况是，患者不希望接受什么治疗。反参与性决策提供了巨大的希望，并可能对那些缺乏能力的人的赋权做出重大贡献，但预期决策和同时决策之间存在重要的不对称，这可能潜在地破坏AD的法律和道德权威。AD是一种单向沟通形式，只有当患者缺乏能力时才会生效，因此不再能够讨论替代治疗和护理选项，无法澄清她的愿望，或者可能撤销她之前表达的愿望。出现重大问题是因为，与同时期的决定不同，ADS的目的是在未来的某个时间生效，那时可能会改变可获得的治疗方案和治疗方法，或者个人的利益可能与预期的完全和不可预见的不同。此外，可能会出现实际问题，包括如何确保广告是自愿的，以及个人有必要的能力进行广告。这些问题与AD与实施时间之间的时间和心理距离密不可分，但广告也让人质疑社会维护生命神圣性的利益与患者自决权之间的相互作用。因此，ADS通常受到严格的有效性和适用性要求，这些要求通常赋予负责实施AD的医疗专业人员很大的自由裁量权，以确定AD在发生的治疗方案中是否具有约束力。欧洲委员会的人权和生物医学公约(1997)要求考虑患者先前表达的意愿(第9条)，要求至少最低限度地考虑先例自治。一些欧洲司法管辖区走得更远，寻求澄清ADS的地位，并通过对至少一些ADS的重要性和约束性提供法律承认来促进法律确定性。本系列研讨会将审议欧洲对预测性决策的一系列立法反应，试图在发生提前决策的实际背景下探讨这些反应。它将把法律话语与政策和实践话语联系起来，并考虑对预期决策的目的和潜力的共同理解如何有助于起草既反映作者意图又有可能在以后由医疗保健专业人员实施的广告。

项目成果

Advance decisions, welfare attorneys and statements of wishes: The belt, braces and corset approach to advance care planning

预先决定、福利律师和意愿声明：使用腰带、支架和紧身胸衣进行预先护理计划

• DOI: 10.1177/0968533219884092
• 发表时间: 2019
• 期刊: Medical Law International
• 作者: Samanta J

Cases and Regulation of Advance Decisions in Germany

德国预先决定的案例和规定

• DOI: 10.1163/15718093-12540385
• 发表时间: 2018
• 期刊: European Journal of Health Law
• 影响因子: 0.8
• 作者: Albers M

Childbirth, Vulnerability and Law - Exploring Issues of Violence and Control

分娩、脆弱性和法律——探索暴力和控制问题

• DOI: 10.4324/9780429443718-11
• 发表时间: 2019
• 作者: Halliday S