surrogate decision-making

代理决策
  • 文章类型: Journal Article
    严重疾病或受伤的经历经常导致脆弱性增加。在决策能力受损的情况下,这个漏洞是由威胁到病人的自主权。此病例报告提供了一个机会,可以探讨依赖代理决策者的严重损害患者的自主性与脆弱性之间的精心交织的关系。对自主性和脆弱性的扩展观点适用于患有严重和改变生活的脊髓损伤和医源性决策能力丧失的年轻妇女,以说明尽管有特殊的脆弱性,人们如何能够体验到增强的自主性,并通过代孕调解的自主性变得不那么脆弱。还揭示了代理人的态度和行为如何增强致病性脆弱性并破坏患者自主性和脆弱性之间的平衡。通过有条理的审查和强有力的审议,临床伦理委员会可以在帮助困境护理团队调和两者方面发挥稳定作用.
    The experience of serious illness or injury frequently results in increased vulnerability. In cases in which decision-making capacity is compromised, this vulnerability is compounded by threats to a patient\'s autonomy. This case report presents an opportunity to explore the elaborately entwined relationship between autonomy and vulnerability in patients with severe impairment who are reliant on surrogate decision-makers. Expanded views of autonomy and vulnerability are applied to the case of a young woman with a severe and life-altering spinal cord injury and iatrogenic loss of decisional capacity to illustrate how one can experience enhanced autonomy despite special vulnerability and can be made less vulnerable through surrogate-mediated autonomy. Also revealed is how attitudes and actions of surrogates can potentiate pathogenic vulnerability and disturb the balance between patient autonomy and vulnerability. Through methodical review and robust deliberation, clinical ethics committees can play a stabilizing role in helping distressed care teams reconcile the two.
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  • 文章类型: English Abstract
    Respect of human dignity is an unquestionable part of daily clinical routine as well as of evaluations in medical ethics. Some aspects of human dignity are a subject of transformation in the course of a lifetime. If the ability to form a will is reduced, it might be difficult to satisfy the individual perception of a dignified treatment, which is of particular interest in terminal care. As illustrated by the presented case report, moral problems can arise when the patient\'s present verbal or non-verbal expressions are opposed to what is documented or what is estimated by dependants to be the individual\'s will. In clinical decision-making processes, the determination of the will via an advance directive can be overstated, which can go so far that human dignity is reduced to autonomy. A concept of dignity reduced to autonomy misses the point not only of a dignity-centered medical care but also of shared decision-making. In situations at the end of life other aspects, such as authenticity or self-actualization should be considered when respecting the individual\'s dignity. Medicine should as such not marginalize death but provide a care based on principles that focus on human interaction and respect for a comprehensive concept of dignity.
    UNASSIGNED: Das Respektieren der Menschenwürde ist zweifellos ein zentraler Bestandteil des klinischen Alltags und von medizinethischen Evaluationen. Manche Aspekte der Menschenwürde unterliegen im Laufe des Lebens einer gewissen Wandlung. Wenn die Fähigkeit zur freien Willensbildung eingeschränkt ist, kann es erschwert sein, den individuellen Vorstellungen einer würdevollen Behandlung gerecht zu werden, was speziell am Lebensende an Bedeutung gewinnt. Anhand einer Kasuistik soll demonstriert werden, welche moralischen Problemstellungen auftreten können, wenn aktuelle Willensbekundungen des Patienten gegensätzlich sind zu dem, was vorausverfügt wurde oder den Angehörigen vertraut ist. Bei der klinischen Entscheidungsfindung kann die Betonung der Willensfestlegung in einer Patientenverfügung so weit führen, dass Menschenwürde auf Autonomie reduziert wird. Ein auf Autonomie reduziertes Konzept der Menschenwürde geht aber am Kern sowohl einer würdezentrierten Medizin als auch der partizipativen Entscheidungsfindung vorbei. Komplementäre Aspekte der Menschenwürde, wie beispielsweise Authentizität und Selbstaktualisierung, müssen berücksichtigt werden. Außerdem sollte die Medizin als solche den Tod nicht marginalisieren, sondern eine Versorgung, die die Prinzipien der menschlichen Interaktion und einer umfänglichen Auffassung von Würde fokussiert, anbieten.
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  • 文章类型: Journal Article
    背景:减少危重病人替代决策者心理困扰的努力取得了有限的成功,有些甚至加剧了痛苦。
    目的:本研究的目的是确定可行性,可接受性,和EMPOWER(增强和动员健康和复原力的潜力)的初步功效,超简短(2小时),6个模块的代孕者手动心理干预。
    方法:报告患者有显著焦虑和/或情感上亲密关系的代理人(n=60)在三家大都市医院之一随机接受EMPOWER或强化常规护理(EUC)。参与者完成了对EMPOWER的可接受性和干预前心理困扰措施的评估,立即干预后,以及1个月和3个月的随访评估。
    结果:EMPOWER的交付似乎是可行的,89%的参与者完成了所有6个模块,并且可以接受,满意度较高(平均值=4.5/5,SD=.90)。与EUC相比,意向治疗分析显示,EMPOWER在减少创伤困扰(Cohen\'sd=-0.21,小效果)后立即干预和悲伤强度(d=-0.70,中大效果),创伤后应激(d=-0.74,中等效应),经验回避(d=-0.46,中等效应),和抑郁(d=-0.34,小效果)干预后3个月。在随机分配到EMPOWER的替代患者中,替代患者对整体重症监护的满意度较高(d=0.27,效果较小)。
    结论:EMPOWER似乎可行且可接受,提高代理人对重症监护的满意度,并防止创伤后压力的升级,悲伤,3个月后出现抑郁症。
    BACKGROUND: Efforts to reduce the psychological distress of surrogate decision-makers of critically ill patients have had limited success, and some have even exacerbated distress.
    OBJECTIVE: The aim of this study was to determine the feasibility, acceptability, and preliminary efficacy of EMPOWER (Enhancing and Mobilizing the POtential for Wellness and Resilience), an ultra-brief (∼2-hour), 6-module manualized psychological intervention for surrogates.
    METHODS: Surrogates who reported significant anxiety and/or an emotionally close relationship with the patient (n=60) were randomized to receive EMPOWER or enhanced usual care (EUC) at one of three metropolitan hospitals. Participants completed evaluations of EMPOWER\'s acceptability and measures of psychological distress pre-intervention, immediately post-intervention, and at 1- and 3-month follow-up assessments.
    RESULTS: Delivery of EMPOWER appeared feasible, with 89% of participants completing all 6 modules, and acceptable, with high ratings of satisfaction (mean=4.5/5, SD = .90). Compared to EUC, intent-to-treat analyses showed EMPOWER was superior at reducing peritraumatic distress (Cohen\'s d = -0.21, small effect) immediately post-intervention and grief intensity (d = -0.70, medium-large effect), posttraumatic stress (d = -0.74, medium-large effect), experiential avoidance (d = -0.46, medium effect), and depression (d = -0.34, small effect) 3 months post-intervention. Surrogate satisfaction with overall critical care (d = 0.27, small effect) was higher among surrogates randomized to EMPOWER.
    CONCLUSIONS: EMPOWER appeared feasible and acceptable, increased surrogates\' satisfaction with critical care, and prevented escalation of posttraumatic stress, grief, and depression 3 months later.
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  • 文章类型: Journal Article
    背景:重症监护临床试验的登记通常由于需要依赖替代决策者而受到阻碍。确定促进纳入重症监护临床试验的潜在干预措施,我们需要更好地了解重症监护临床试验纳入的替代决策.
    目的:重症监护试验纳入的障碍和促进因素是什么?替代决策者对促进试验纳入的拟议干预措施有哪些看法?
    方法:作者对20位接受机械通气的危重病患者的替代决策者进行了半结构化访谈。访谈被逐字记录和转录,并使用归纳法分析主题。
    结果:20名危重患者的替代决策者参加了半结构化访谈。主题分析证实了先前的研究,表明对系统的信任,评估参与试验的风险和收益,帮助别人的愿望,并将医学知识作为试验登记的重要激励因素。在危重病患者的替代决策者中确定了两个先前未描述的担忧,包括可能干扰临床治疗决策和对安慰剂的负面情绪。代理人将公众认可和参与慈善捐赠视为鼓励试验注册的有利潜在干预措施。然而,参与者认为直接的财务激励措施,并在医疗回合中对研究参与者进行了负面的优先考虑。
    结论:这项研究证实并扩展了先前的发现,即卫生系统信任,研究风险和收益,利他主义,知识生成,对临床护理和安慰剂的干扰是替代决策者在重症监护试验中纳入患者的主要关注点和障碍.未来的研究需要评估是否以患者的名义进行慈善捐赠和公众认可是促进纳入重症监护试验的有效策略。
    BACKGROUND: Enrollment into critical care clinical trials is often hampered by the need to rely on surrogate decision-makers. To identify potential interventions facilitating enrollment into critical care clinical trials, a better understanding of surrogate decision-making for critical care clinical trial enrollment is needed.
    OBJECTIVE: What are the barriers and facilitators of critical care trial enrollment? What are surrogate decision-makers\' perspectives on proposed interventions to facilitate trial enrollment?
    METHODS: We conducted semistructured interviews with 20 surrogate decision-makers of critically ill patients receiving mechanical ventilation. The interviews were recorded and transcribed verbatim, and analyzed for themes using an inductive approach.
    RESULTS: Thematic analysis confirmed previous research showing that trust in the system, assessing the risks and benefits of trial participation, the desire to help others, and building medical knowledge as important motivating factors for trial enrollment. Two previously undescribed concerns among surrogate decision-makers of critically ill patients were identified, including the potential to interfere with clinical treatment decisions and negative sentiment about placebos. Surrogates viewed public recognition and charitable donations for participation as favorable potential interventions to encourage trial enrollment. However, participants viewed direct financial incentives and prioritizing research participants during medical rounds negatively.
    CONCLUSIONS: This study confirms and extends previous findings that health system trust, study risks and benefits, altruism, knowledge generation, interference with clinical care, and placebos are key concerns and barriers for surrogate decision-makers to enroll patients in critical care trials. Future studies are needed to evaluate if charitable giving on the patient\'s behalf and public recognition are effective strategies to promote enrollment into critical care trials.
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  • 文章类型: Journal Article
    照顾无人代表的患者包括法律,伦理,以及有关决策的道德挑战,同意,病人的价值观,愿望,最佳利益,以及医疗团队的专业诚信和自主权。在这篇文章中,我考虑了人口老龄化的影响和健康的社会决定因素的影响,并建议如果没有预防性干预,未住院患者的数量将继续增加.健康,社会,和成为无人代表的法律风险因素需要多学科的回应。医疗法律合作伙伴关系(MLP)将医疗保健和法律专业人员聚集在一起,以解决风险因素和危害健康的法律需求。本文讨论了MLPs在识别风险个体中的作用,提供预防性干预措施,并提供支持。我提出建议并得出结论,积极的MLP通过提供干预措施以防止个人变得无人代表,从而为照顾无人代表的患者提供了一种可持续的道德挑战。
    Caring for unrepresented patients encompasses legal, ethical, and moral challenges regarding decision-making, consent, the patient\'s values, wishes, best interest, and the healthcare team\'s professional integrity and autonomy. In this article, I consider the impact of the aging population and the effects of the social determinants of health and suggest that without preventive intervention, the number of unrepresented patients will continue to increase. The health, social, and legal risk factors for becoming unrepresented require a multidisciplinary response. Medical-Legal Partnerships (MLPs) bring healthcare and legal professionals together to address risk factors and health-harming legal needs. The article discusses the role of MLPs in identifying at-risk individuals, providing preventive interventions, and providing support. I make recommendations and conclude that proactive MLPs offer a sustainable approach to the ethical challenges in caring for unrepresented patients by providing interventions to prevent individuals from becoming unrepresented.
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  • 文章类型: Journal Article
    随着痴呆症发病率的上升,提高代理决策者的利用率,包括法定监护人,是预期的。本手稿对住院医师的经验和对需求的看法进行了分析,角色,以及照顾有需要的老年人的责任,或者已经在下面,法定监护。这是一项横断面研究,在三级学术医疗中心进行。发送了一份调查,通过Qualtrics,所有急诊医学,家庭医学,内科,普外科,和医学-儿科住院医师。在33名合格的住院医师中,有88名(26.4%)完成了调查。大多数(98.9%)报告照顾受监护的病人,然而,许多住院医师报告称,监护的角色和责任存在很大的不确定性,包括其潜在的好处和局限性。他们还对监护人促进处置的能力表现出误解和过度自信,确保金融安全,并分配代码状态,除其他事项外。我们的研究强调了对医学学员进行监护主题的结构化和定向教育的重要性。
    As the incidence of dementia rises, increased utilization of surrogate decision-makers, including legal guardians, is anticipated. This manuscript presents an analysis of resident physicians\' experiences and perceptions regarding requirements, roles, and responsibilities of caring for older adults in need of, or already under, legal guardianship. This is a cross-sectional study, conducted at a tertiary academic medical center. A survey was sent, via Qualtrics, to all emergency medicine, family medicine, internal medicine, general surgery, and medicine-pediatric resident physicians. Eighty-eight out of three hundred thirty-three (26.4%) eligible residents physicians completed the survey. Most (98.9%) reported caring for patients under guardianship, yet many resident physicians reported significant uncertainty regarding the roles and responsibilities of guardianship, including its potential benefits and limitations. They also displayed misconceptions and overconfidence about guardians\' abilities to facilitate disposition, ensure financial security, and assign code status, among other matters. Our study highlights the importance of structured and directed education on the topic of guardianship for medical trainees.
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  • 文章类型: Journal Article
    尽管赞同与医学有关的阴谋论的人通常对特定的医疗保健措施持消极态度,甚至可能回避整个医疗保健系统,阴谋论在生物伦理学文学中受到的关注很少。因此,鉴于阴谋理论化似乎相当普遍,人们坚持认为,关于如何处理阴谋论,生物伦理学有很大的必要进行辩论。虽然这些建议通常侧重于毫无根据的阴谋论在公共卫生背景下的影响,内森·斯托特(NathanStout)最近的论点集中在这些理论对个人临床决策的影响上。在这篇文章中,我坚持认为,充分认识到引起Stout关注的阴谋论的影响,不需要生物伦理学就对阴谋论在医疗保健中的影响的适当反应进行辩论。在评估了两个可能的反对意见之后,最后,我简要澄清了对Stout的回应的所谓含义。
    Although people who endorse conspiracy theories related to medicine often have negative attitudes toward particular health care measures and may even shun the healthcare system in general, conspiracy theories have received rather meager attention in bioethics literature. Consequently, and given that conspiracy theorizing appears rather prevalent, it has been maintained that there is significant need for bioethics debate over how to deal with conspiracy theories. While the proposals have typically focused on the effects that unwarranted conspiracy theories have in the public health context, Nathan Stout\'s recent argument concentrates on the impacts that such theories have at the individual level of clinical decision-making. In this article, I maintain that duly acknowledging the impacts of conspiracy theories that raise Stout\'s concern does not require bioethics debate over the proper response to the influence of conspiracy theories in healthcare. Having evaluated two possible objections, I conclude by briefly clarifying the purported import of the response to Stout.
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  • 文章类型: Journal Article
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  • 文章类型: Journal Article
    许多痴呆症患者有兴趣参与研究,包括他们不再有能力提供知情同意。高级研究指令(ARD)使人们能够在决定性地丧失工作能力之前记录他们对参与研究的意愿。然而,可用的ARD资源很少。这项澳大利亚访谈研究引起了55岁及以上的人们对ARD表格的内容以及指导手册和支持研究计划的过程的看法。参与者(n=25;55至83岁)对痴呆症研究感兴趣。所有参与者都将ARD材料描述为易于理解,所有人都表示愿意参加未来的研究。近一半的人认为ARD应该是法律上可执行的,而其他人则认为这是一份指导他们参与研究的不具约束力的文件。亲密的家庭成员更喜欢作为代理决策者。ARD表格和指南手册可适用于其他地方。
    Many people with dementia are interested in taking part in research, including when they no longer have capacity to provide informed consent. Advance research directives (ARD) enable people to document their wishes about research participation prior to becoming decisionally incapacitated. However, there are few available ARD resources. This Australian interview study elicited the views of people aged 55 years and older about the content of an ARD form and guidance booklet and processes to support research planning. Participants (n = 25; 55 to 83 years) had interests in dementia research. All participants described the ARD materials as easy to understand, and all expressed willingness to take part in future research. Nearly half believed that an ARD should be legally enforceable, while others saw it as a nonbinding document to guide decisions about their participation in research. Close family members were preferred as proxy decision-makers. The ARD form and guidance booklet may be adapted for use elsewhere.
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  • 文章类型: Journal Article
    背景:食物过敏仍然是许多儿童的常见问题和终身疾病。近年来,食物过敏管理越来越多地涉及有关食物口服免疫疗法的讨论。虽然自治的伦理考虑,仁慈,非恶意,正义暗示了这些对话,应用这些原则可能很复杂,特别是在年幼的孩子。幼儿家庭承担代理决策者的角色,必须在眼前的风险与长期利益的希望之间取得平衡。
    目的:从伦理角度探讨儿童口服免疫治疗的实施。
    方法:要通过伦理视角评估OIT,进行了文献检索,以探索该领域目前已发布的框架.
    结果:危害原则的评估,基本利益原则,父母决策的最大利益原则可以提供信息。共同决策仍然是与患者-家庭单位互动以个性化最佳护理的过程的核心,在正确的时间,尽量减少决策上的不和谐。虽然OIT在促进健康和福祉方面处于有利地位,对公平的挑战,可持续性必须考虑组织支持,以改善适当患者的获取。
    结论:虽然食物OIT的方法可以根据每个患者-家庭单位的个体情况进行定制,伦理原则必须指导开始和继续治疗的决定。传统的自治伦理原则,仁慈,非恶意,在考虑OIT的伦理背景时,正义仍然是基石。
    Food allergy remains a common problem and a lifelong condition for many children. In recent years, food allergy management has increasingly involved conversations about food oral immunotherapy (OIT). Although ethical considerations of autonomy, beneficence, nonmaleficence, and justice implicitly inform these conversations, applying these principles can be complex, particularly in young children. Families of young children assume a role of surrogate decision-maker and must balance immediate risks with the hope of longer-term benefits.
    To explore implementation of OIT in children through an ethical lens.
    To evaluate OIT through an ethical lens, we conducted a literature search to explore currently published frameworks in this area.
    Evaluation of the harm principle, the basic interest principle, and the best interest principle of parental decision-making can be informative. Shared decision-making continues to be central to the process of engaging with patient-family units to individualize the best care, at the right time, and minimize decisional discord. Although OIT is well-positioned to promote health and well-being, challenges to equity, sustainability, and organizational support must be considered to improve access for appropriate patients.
    Whereas approaches to food OIT may be tailored to the individual context of each patient-family unit, ethical principles must guide decisions to initiate and continue therapy. Traditional ethical principles of autonomy, beneficence, nonmaleficence, and justice remain cornerstones when considering the ethical context of OIT.
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