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Advance Decisions: Informing implementation strategies through interdisciplinary and cross-national dialogue

提前决策：通过跨学科和跨国对话为实施策略提供信息

基本信息

批准号：
ES/J022306/1
负责人：
Celia Kitzinger
金额：
$ 1.91万
依托单位：
University of York
依托单位国家：
英国
项目类别：
Research Grant
财政年份：
2012
资助国家：
英国
起止时间：
2012 至无数据
项目状态：
已结题

来源：
https://gtr.ukri.org/projects?ref=ES%2FJ022306%2F1
关键词：
Advance Decisions Informing implementation strategies

项目摘要

An Advance Decision is a document that allows people to set out their wishes and preferences for medical treatment in advance, in the event that they later become unable to express those wishes (e.g. because they are in a coma, or have dementia). They were recently given statutory legal force in the Mental Capacity Act 2005, which came into force in 2007. Advance refusals of treatment (e.g. refusing a ventilator, or artificial nutrition and hydration) are legally binding on doctors in England and Wales and are actively promoted by many key charities, including Age UK, Macmillan Cancer Support, the Motor Neurone Disease Association, Marie Curie Cancer Care and most hospices. This new legislation is in part a response to the widely recognised problem that people are not getting the kind of death they want (e.g. home rather than hospital) and to the acknowledged problem of over-treatment at the end of life (Leadbeater & Garber, 2010). There is evidence that increased uptake of ADs is likely to result in people's choices about the kind of treatments they do and do not want to receive at the end of life being better respected (Satherley & Hehir, 2010). However, uptake of ADs has been low: survey polls show that uptake ranges from about 3% to 8% in the general population. There is virtually no research in the UK addressing this issue. This is a timely seminar series that will address some of the issues arising five years after the (2007) implementation of the Mental Capacity Act 2005.The aim of this seminar series is to address the problem with uptake of ADs in the UK from a trans-national and interdisciplinary perspective that uses lessons learnt from the much longer history of ADs in the USA and brings together people working in charities concerned with promoting ADs, academics with expertise across a range of disciplines including law, medical, sociology/psychology and bioethics (including a leading bioethicist from the USA), and practising doctors.The main objectives are:(i) to develop our understandings of what inhibits people in the UK from planning ahead for their medical care in advance of a crisis(ii) to work out the best ways of encouraging uptake of ADs(iii) to identify new research agendas arising out of the introduction of ADs into statutory law in the UK(iv) to collaborate on the production of an edited book addressing these issues.We will also inform a wider public discussion of ADs by creating an online forum recording the findings of the symposium (e.g. posting speaker slides, and a collection of completed ADs with commentary) and by working with a local community arts center to show films followed by discussion sessions around this issue. The seminar series will benefit the participants for whom it will be an intensive interdisciplinary and academic-practitioner learning experience; the practice-settings in which many of them also work (e.g. in law, medicine and palliative care) and in relation to which they sit on influential committees and working parties drawing up guidelines for practice; the charities and hospices aiming to increase the use of ADs - (representatives from these will also be seminar participants); and other academic researchers in the field of end-of-life decision making and informed choice in medical care.

预先决定是一份文件，允许人们提前提出他们对医疗的愿望和偏好，以防他们后来无法表达这些愿望（例如，因为他们处于昏迷状态或患有痴呆症）。它们最近在 2005 年《心智能力法案》中获得了法定法律效力，该法案于 2007 年生效。提前拒绝治疗（例如拒绝呼吸机、或人工营养和补水）对英格兰和威尔士的医生具有法律约束力，并得到许多主要慈善机构的积极推动，包括英国年龄组织、麦克米伦癌症支持组织、运动神经元疾病协会、居里夫人癌症护理和大多数临终关怀机构。这项新立法在一定程度上是对人们没有得到他们想要的死亡方式（例如在家而不是医院）这一广泛认可的问题以及对生命临终时过度治疗的公认问题的回应（Leadbeater & Garber，2010）。有证据表明，AD 的吸收增加可能会导致人们对自己在生命结束时愿意接受和不愿意接受的治疗类型的选择得到更好的尊重（Satherley & Hehir，2010）。然而，AD 的使用率一直很低：民意调查显示，普通人群的使用率约为 3% 至 8%。英国几乎没有研究解决这个问题。这是一个及时的研讨会系列，将解决 2005 年《心智能力法案》（2007 年）实施五年后出现的一些问题。该研讨会系列的目的是从跨国和跨学科的角度解决英国接受 AD 的问题，利用从美国 AD 的悠久历史中汲取的经验教训，并将从事推广 AD 的慈善机构工作人员、具有跨学科专业知识的学者聚集在一起，包括法律、医学、社会学/心理学和生物伦理学（包括来自美国的领先生物伦理学家）以及执业医生。主要目标是：（i）加深我们对是什么阻碍英国人民在危机发生前提前计划医疗护理的理解（ii）找出鼓励采用 AD 的最佳方法（iii）确定因将 AD 引入成文法而产生的新研究议程英国(iv) 合作制作一本解决这些问题的编辑书籍。我们还将通过创建一个记录研讨会结果的在线论坛（例如发布演讲者幻灯片和带有评论的完整广告集）以及与当地社区艺术中心合作放映电影，然后围绕该问题举行讨论会，为更广泛的广告公共讨论提供信息。该研讨会系列将使参与者受益，这将是一次密集的跨学科和学术实践学习体验；他们中的许多人也工作的实践环境（例如在法律、医学和姑息治疗领域）以及他们在有影响力的委员会和工作组中的地位，制定实践指南；旨在增加 AD 使用的慈善机构和临终关怀机构 -（这些机构的代表也将成为研讨会参与者）；以及临终决策和医疗保健知情选择领域的其他学术研究人员。