PDF(Pubmed)
Abstract：
BACKGROUND: Despite the availability of guidance for the provision of good end-of-life care, there are significant variations across the UK in its delivery. This study sought to identify the influences on end-of-life treatment and care planning across several areas where deficiencies in evidence-based practice have been identified, and to develop consensus among healthcare providers and users for recommendations on how to address these deficits.
METHODS: An online survey (106 responses), qualitative interviews (55 participants) and a consensus-building exercise (475 participants in the initial round) were undertaken. Participants included people approaching the end of life, people important to them, and health and care practitioners who help people plan for the end of life or provide end-of-life care. Recruitment was via online methods, including social media and online newsletters of relevant charities and professional organisations. Thematic analysis using the framework method was used to analyse qualitative data. Synthesis of qualitative and quantitative data led to the development of statements regarding recommendations for advancing implementation of good practice. A two-stage consensus-building exercise asked respondents first to rate these statements and then to rate and rank further sub-recommendations in three areas.
RESULTS: Results from the consensus building exercise confirmed that end-of-life care planning conversations are to be welcomed and encouraged, and that the priority should be to have the conversation (which could be initiated by a range of professionals, or people planning end-of-life care themselves), rather than to wait for an ideal time to have it. Further rounds identified specific components of a standardised record of end-of-life treatment and care preferences that should be prioritised, specific health and care staff that should be empowered through training in advanced communication, and aspects of communication most important to include in training for healthcare professionals.
CONCLUSIONS: Our study has identified opportunities for action to improve end-of-life treatment and care by combining multiple stakeholder perspectives and building consensus among them: the resulting recommendations have sufficient granularity to be implemented and evaluated. They are of relevance to policy makers, those who train healthcare professionals, and those looking after patients approaching the end of life.
METHODS: An online survey (106 responses), qualitative interviews (55 participants) and a consensus-building exercise (475 participants in the initial round) were undertaken. Participants included people approaching the end of life, people important to them, and health and care practitioners who help people plan for the end of life or provide end-of-life care. Recruitment was via online methods, including social media and online newsletters of relevant charities and professional organisations. Thematic analysis using the framework method was used to analyse qualitative data. Synthesis of qualitative and quantitative data led to the development of statements regarding recommendations for advancing implementation of good practice. A two-stage consensus-building exercise asked respondents first to rate these statements and then to rate and rank further sub-recommendations in three areas.
RESULTS: Results from the consensus building exercise confirmed that end-of-life care planning conversations are to be welcomed and encouraged, and that the priority should be to have the conversation (which could be initiated by a range of professionals, or people planning end-of-life care themselves), rather than to wait for an ideal time to have it. Further rounds identified specific components of a standardised record of end-of-life treatment and care preferences that should be prioritised, specific health and care staff that should be empowered through training in advanced communication, and aspects of communication most important to include in training for healthcare professionals.
CONCLUSIONS: Our study has identified opportunities for action to improve end-of-life treatment and care by combining multiple stakeholder perspectives and building consensus among them: the resulting recommendations have sufficient granularity to be implemented and evaluated. They are of relevance to policy makers, those who train healthcare professionals, and those looking after patients approaching the end of life.
摘要：
背景：尽管有提供良好的临终关怀的指导，整个英国的交付方式有很大差异。这项研究旨在确定在几个领域中，基于证据的实践中存在缺陷，对临终治疗和护理计划的影响。并在医疗保健提供者和用户之间达成共识，以就如何解决这些缺陷提出建议。
方法：一项在线调查（106份回复），我们进行了定性访谈(55名参与者)和建立共识(第一轮475名参与者).参与者包括接近生命尽头的人，对他们来说很重要的人，以及帮助人们计划生命终结或提供生命终结护理的健康和护理从业人员。招聘是通过在线方式，包括相关慈善机构和专业组织的社交媒体和在线通讯。使用框架方法的主题分析用于分析定性数据。定性和定量数据的综合导致制定关于推进良好做法实施的建议的声明。两阶段建立共识的工作要求受访者首先对这些陈述进行评分，然后对三个方面的进一步子建议进行评分和排名。
结果：建立共识的结果证实，临终护理计划对话应受到欢迎和鼓励，优先事项应该是进行对话（可以由一系列专业人士发起，或计划自己进行临终护理的人)，而不是等待一个理想的时间来拥有它。进一步的回合确定了应优先考虑的报废治疗和护理偏好的标准化记录的特定组成部分，应通过高级沟通培训获得授权的特定医疗保健人员，以及最重要的沟通方面，包括在医疗保健专业人员的培训中。
结论：我们的研究通过结合多个利益相关者的观点并在其中建立共识，确定了改善临终治疗和护理的行动机会：由此产生的建议有足够的粒度来实施和评估。它们与决策者有关，那些培训医疗保健专业人员的人，以及那些照顾接近生命尽头的病人的人。
方法：一项在线调查（106份回复），我们进行了定性访谈(55名参与者)和建立共识(第一轮475名参与者).参与者包括接近生命尽头的人，对他们来说很重要的人，以及帮助人们计划生命终结或提供生命终结护理的健康和护理从业人员。招聘是通过在线方式，包括相关慈善机构和专业组织的社交媒体和在线通讯。使用框架方法的主题分析用于分析定性数据。定性和定量数据的综合导致制定关于推进良好做法实施的建议的声明。两阶段建立共识的工作要求受访者首先对这些陈述进行评分，然后对三个方面的进一步子建议进行评分和排名。
结果：建立共识的结果证实，临终护理计划对话应受到欢迎和鼓励，优先事项应该是进行对话（可以由一系列专业人士发起，或计划自己进行临终护理的人)，而不是等待一个理想的时间来拥有它。进一步的回合确定了应优先考虑的报废治疗和护理偏好的标准化记录的特定组成部分，应通过高级沟通培训获得授权的特定医疗保健人员，以及最重要的沟通方面，包括在医疗保健专业人员的培训中。
结论：我们的研究通过结合多个利益相关者的观点并在其中建立共识，确定了改善临终治疗和护理的行动机会：由此产生的建议有足够的粒度来实施和评估。它们与决策者有关，那些培训医疗保健专业人员的人，以及那些照顾接近生命尽头的病人的人。
