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Living bioethics, theories and children's consent to heart surgery. 活着的生命伦理,理论和儿童对心脏手术的同意
Q1 Arts and Humanities Pub Date : 2023-12-01 Epub Date: 2022-04-07 DOI: 10.1177/14777509221091086
Priscilla Alderson, Deborah Bowman, Joe Brierley, Nathalie Dedieu, Martin J Elliott, Jonathan Montgomery, Hugo Wellesley

Background: This analysis is about practical living bioethics and how law, ethics and sociology understand and respect children's consent to, or refusal of, elective heart surgery. Analysis of underlying theories and influences will contrast legalistic bioethics with living bioethics. In-depth philosophical analysis compares social science traditions of positivism, interpretivism, critical theory and functionalism and applies them to bioethics and childhood, to examine how living bioethics may be encouraged or discouraged. Illustrative examples are drawn from research interviews and observations in two London paediatric cardiac units. This paper is one of a series on how the multidisciplinary cardiac team members all contribute to the complex mosaic of care when preparing and supporting families' informed consent to surgery.

Results: The living bioethics of justice, care and respect for children and their consent depends on theories and practices, contexts and relationships. These can all be undermined by unseen influences: the history of adult-centric ethics; developmental psychology theories; legal and financial pressures that require consent to be defined as an adult contract; management systems and daily routines in healthcare that can intimidate families and staff; social inequalities. Mainstream theories in the clinical ethics literature markedly differ from the living bioethics in clinical practices.

Conclusion: We aim to contribute to raising standards of respectful paediatric bioethics and to showing the relevance of virtue and feminist ethics, childhood studies and children's rights.

这项分析是关于实用的生命伦理学,以及法律、伦理学和社会学如何理解和尊重儿童同意或拒绝选择性心脏手术。分析其基本理论和影响,将法律生命伦理学与生活生命伦理学进行对比。深入的哲学分析比较了实证主义、解释主义、批判理论和功能主义的社会科学传统,并将其应用于生物伦理学和儿童时期,以考察如何鼓励或劝阻活的生物伦理学。举例说明来自伦敦两个儿科心脏科的研究访谈和观察。这篇论文是一系列关于多学科心脏团队成员在准备和支持家庭知情同意手术时如何为复杂的护理马赛克做出贡献的论文之一。正义、关爱和尊重儿童及其同意的生命伦理取决于理论和实践、背景和关系。这些都可能被看不见的影响所破坏:以成年人为中心的伦理史;发展心理学理论;需要同意才能被定义为成人合同的法律和财务压力;医疗保健的管理系统和日常程序可能会恐吓家人和工作人员;社会不平等。临床伦理学文献中的主流理论与临床实践中的生命伦理学有着显著的不同。我们的目标是促进提高尊重儿童的生物伦理标准,并展示美德和女权主义伦理、儿童研究和儿童权利的相关性。
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引用次数: 2
Chemo sickness as existential feeling: A conceptual contribution to person-centered phenomenological oncology care 作为存在感的化疗疾病:对以人为中心的现象学肿瘤学护理的概念贡献
Q1 Arts and Humanities Pub Date : 2023-11-07 DOI: 10.1177/14777509231208376
Ryan Hart
In response to cancer, patients may be thrown into precarious processes of remaking their purpose, identity, and connections to the world around them. Thoughtful and thorough responses to these issues can be supported by person-centered phenomenological approaches to caring for patients. The importance of perspectives on illness offered by theoretical phenomenology will become apparent through the example of the experience of nausea, or perhaps more accurately put—chemo sickness. The focus here is on how chemo sickness alters one's way of relating to the world. I will examine the phenomenon of nausea through the lens of the phenomenological concept of mood—an existential feeling that engenders a diffused tone permeating through one's world and shapes the envisioned possibilities on one's horizon.
为了应对癌症,患者可能会被投入到一个不稳定的过程中,重塑他们的目标、身份,以及与周围世界的联系。对这些问题的深思熟虑和彻底的回应可以通过以人为中心的现象学方法来护理患者。理论现象学提供的疾病视角的重要性将通过恶心体验的例子变得明显,或者更准确地说,是化疗疾病。这里的重点是化疗疾病如何改变一个人与世界联系的方式。我将通过情绪的现象学概念来研究恶心的现象——情绪是一种存在的感觉,它会产生一种弥漫在一个人的世界里的弥漫色调,并在一个人的视野中塑造出设想的可能性。
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引用次数: 0
Informal caregivers – A missing voice in clinical ethics 非正式护理人员——临床伦理缺失的声音
Q1 Arts and Humanities Pub Date : 2023-11-06 DOI: 10.1177/14777509231210795
Aleksandra Glos
This paper argues that the missing voice in clinical ethics is that of informal caregivers. Despite their substantial contribution to care provided to individuals with disabilities, chronic illness or dementia, informal caregivers are rarely thought of as members of the healthcare team and their narratives are rarely listened to and included in clinical and ethical decisions. Addressing this gap, this paper discusses the reasons for the systemic misrecognition of informal caregivers in healthcare systems and argues for their greater narrative inclusion on the clinical, legal and social planes.
本文认为,临床伦理学中缺失的声音是非正式护理人员的声音。尽管非正式护理人员为残疾人、慢性病患者或痴呆症患者的护理做出了巨大贡献,但他们很少被视为医疗团队的成员,他们的叙述很少被倾听,也很少被纳入临床和道德决策。为了解决这一差距,本文讨论了医疗保健系统中对非正式护理人员的系统性误解的原因,并主张在临床、法律和社会层面上对其进行更大的叙述。
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引用次数: 0
Stop agonising over informed consent when researchers use crowdsourcing platforms to conduct survey research 当研究人员使用众包平台进行调查研究时,不要再为知情同意而烦恼了
Q1 Arts and Humanities Pub Date : 2023-11-03 DOI: 10.1177/14777509231211666
Jonathan Lewis, Vilius Dranseika, Søren Holm
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引用次数: 0
Communicating conviction: A pilot study of patient perspectives on guidance during medical decision-making in the United States 沟通信念:美国医疗决策指导过程中患者观点的试点研究
Q1 Arts and Humanities Pub Date : 2023-11-03 DOI: 10.1177/14777509231210770
Karel-Bart Celie, Allyn Auslander, Stuart Kuschner
The COVID-19 pandemic has highlighted the difficult task of balancing access to misinformation with respect for patient decision-making. Due to its innate antagonism, the paradigm of “physician paternalism” versus “patient autonomy” may not adequately capture the clinical relationship. The authors hypothesized that most patients would, in fact, prefer significant physician input as opposed to unopinionated information when making medical decisions. There is a lack of empirical data corroborating this in the United States. To that end, a survey was distributed to 650 individuals through Amazon Mechanical Turk, of which 499 responses met pre-determined quality criteria. Most respondents believed their doctor's insight would be better than their own if injured or gravely ill. When asked to affirm preferences separately, a significantly higher proportion of respondents preferred guidance from their doctor when making medical decisions compared to being presented with unopinionated information ( p < 0.001). Encouragingly, 93.1% believed that the doctor's primary goal was their health. When asked directly to compare physician guidance to unopinionated information, 69.1% respondents stated they would prefer physician guidance. We found a consistent association between educational/economic background and affirmative responses ( p < 0.001), suggesting particular attention should be paid to patients that are disadvantaged with respect to these demographic factors. The belief in a shared goal, and a consistent preference for physician input, suggests that patients endorse a more collaborative view of the clinical dynamic than is suggested by the paternalism-autonomy paradigm. This pilot study suggests physicians should not be afraid to communicate conviction with regard to treatment decisions.
2019冠状病毒病大流行凸显了在获取错误信息与尊重患者决策之间取得平衡的艰巨任务。由于其固有的对抗性,“医生家长主义”与“患者自主”的范式可能无法充分捕捉临床关系。作者假设,在做出医疗决定时,大多数患者实际上更喜欢重要的医生输入,而不是无偏见的信息。在美国,缺乏证实这一点的经验数据。为此,我们通过亚马逊土耳其机器人向650人分发了一份调查问卷,其中499人的回答符合预先确定的质量标准。大多数受访者认为,如果他们受伤或身患重病,医生的洞察力会比他们自己的更好。当被要求单独确认偏好时,与提供无偏见信息相比,在做出医疗决定时,更倾向于医生指导的受访者比例要高得多(p <0.001)。令人鼓舞的是,93.1%的人认为医生的首要目标是他们的健康。当被要求直接比较医生指导和非个性化信息时,69.1%的受访者表示他们更喜欢医生指导。我们发现教育/经济背景与积极回应之间存在一致的联系(p <0.001),提示应特别关注在这些人口因素方面处于不利地位的患者。对共同目标的信念,以及对医生输入的一贯偏好,表明患者支持一种更合作的临床动态观点,而不是家长式自治范式所建议的观点。这项初步研究表明,医生不应该害怕就治疗决定沟通信念。
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引用次数: 0
The ethics of intra-amniotic drug administration in perinatal clinical practice 围生期临床实践中羊膜内给药伦理
Q1 Arts and Humanities Pub Date : 2023-10-30 DOI: 10.1177/14777509231210758
Grace Hong, Kyrie Eleyson Baden, Rolanda Olds, Elisha Injeti, Julia Muzzy, Justin W Cole, Dennis Sullivan
Providing in-utero treatments to target specific conditions in the fetus is a relatively new approach in perinatal care, with the vast majority of these treatments being used off-label. The high degree of off-label medication use in the perinatal and neonatal settings raises concern for the safety of both the fetuses and expectant mothers. This report presents two examples of intra-amniotic drug administration based on reported clinical cases. From the ethical framework of medical principlism, we examine the competing ethical duties of autonomy, beneficence, and non-maleficence in this setting. We then lay out three fundamental ethical principles for obtaining informed consent and maximizing clinical benefit.
提供针对胎儿特定情况的子宫内治疗是围产期护理的一种相对较新的方法,其中绝大多数治疗都是在标签外使用的。围产期和新生儿环境中超说明书药物的高度使用引起了对胎儿和孕妇安全的关注。本报告提出了两个例子,羊膜内药物管理的基础上报告的临床病例。从医学原则的伦理框架,我们检查竞争的伦理义务的自治,慈善,和非恶意在这种情况下。然后,我们列出了获得知情同意和最大化临床效益的三个基本伦理原则。
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引用次数: 0
The ethics of informed consent for infants born to adolescents: A case study from Malaysia 青少年生育婴儿知情同意的伦理:来自马来西亚的个案研究
Q1 Arts and Humanities Pub Date : 2023-10-17 DOI: 10.1177/14777509231208366
Jeffrey Soon-Yit Lee, Benjamin Wei-Liang Ng, Mohammad Firdaus bin Abdul Aziz
Adolescent pregnancy results from the complex interaction between various internal and external vulnerabilities. These vulnerabilities persist after the infant's birth when the adolescent becomes a parent. Adolescent parents are unfairly stereotyped as unmotivated and incompetent. Some legislations prohibit adolescents from giving consent on the grounds of incompetency. Despite being different, “competency” is frequently used interchangeably with “capacity”; thus, incompetent individuals are often mistaken to lack capacity. Consequently, legally incompetent adolescents who became parents are frequently disregarded during their infant's decision-making process. This article discusses the distinction between the competence and capacity of adolescent parents, the various vulnerabilities that contribute to an adolescent's incompetency, and advocates respect for the adolescent's capacity in making decisions for her infant. We propose a workflow for obtaining informed consent for infants born to adolescents ethically guided by the respect for individuals principle while staying within the country's legal framework.
青少年怀孕是各种内部和外部脆弱性复杂相互作用的结果。这些弱点在婴儿出生后,当青少年成为父母时仍然存在。青少年父母被不公平地定型为缺乏动力和无能。有些立法禁止青少年以不称职为由表示同意。尽管不同,“胜任力”经常与“能力”互换使用;因此,不称职的人常常被误认为缺乏能力。因此,在婴儿做决定的过程中,法律上不称职的成为父母的青少年经常被忽视。本文讨论了青少年父母的能力和能力之间的区别,以及导致青少年无能的各种脆弱性,并提倡尊重青少年为婴儿做决定的能力。我们提出了一个在尊重个人原则的道德指导下,同时在国家法律框架内获得青少年所生婴儿知情同意的工作流程。
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引用次数: 0
Perspectives on informed assent and bodily integrity in prospective deep brain stimulation for youth with refractory obsessive-compulsive disorder 对难治性强迫症青少年前瞻性深部脑刺激的知情同意和身体完整性的看法
Q1 Arts and Humanities Pub Date : 2023-09-16 DOI: 10.1177/14777509231201265
Jared N Smith, Natalie Dorfman, Meghan Hurley, Ilona Cenolli, Kristin Kostick-Quenet, Gabriel Lazaro-Munoz, Eric A Storch, Jennifer Blumenthal-Barby
Background Deep brain stimulation is approved for treating refractory obsessive-compulsive disorder in adults under the US Food and Drug Administration Humanitarian Device Exemption, and studies have shown its efficacy in reducing symptom severity and improving quality of life. While similar deep brain stimulation treatment is available for pediatric patients with dystonia, it is not yet available for pediatric patients with obsessive-compulsive disorder, although soon could be. The prospect of growing indications for pediatric deep brain stimulation raises several ethical concerns relating to bodily integrity, the ability to offer informed assent, and the role pediatric patients play in the decision-making process. Objective The aim of this study is to solicit and assess the views of stakeholders (children, parents, clinicians) on pediatric assent, autonomy, and bodily integrity in the context of potential pediatric deep brain stimulation for obsessive-compulsive disorder. Methods Semi-structured interviews were conducted with pediatric obsessive-compulsive disorder patients ( n = 21), caregivers of pediatric obsessive-compulsive disorder patients aged 14–18 ( n = 19), and clinicians with experience treating refractory obsessive-compulsive disorder ( n = 25). Interviews were transcribed and coded in MAXQDA 2018 and 2020 software and processed for thematic content analysis to isolate and compare specific themes. Results A majority of respondents (74%, 48/65) across all three stakeholder groups voiced that the decision-making process should be collaborative and involve everyone (clinicians: 84% or 21/25, caregivers 71% or 15/21, and patients 63% or 12/19). We identified a split between respondents’ views on who should have the final say in the event of disagreement (38% or 25/65 favored the patient versus 35% or 23/65 favoring caregivers). A split between respondents also emerged concerning the maturity relevant for deep brain stimulation decision-making, with 45% (29/65) favoring developmental maturity (age/physiological development) and 45% (29/65) favoring decisional maturity (capacity to understand and weigh information). A majority of clinicians indicated that they would not move forward with deep brain stimulation without securing patient assent (80% or 20/25), with some stating the only exception is if patient quality of life was very poor and/or they lacked insight. Both caregivers and patients expressed a significant respect for the patient's right to bodily integrity, with 67% of caregivers (14/21) and 68% of patients (13/19) justifying patient involvement in decision-making specifically with reference to infringements of bodily integrity. Conclusion Our findings demonstrate that despite broad agreement across stakeholders that the decision-making process for pediatric deep brain stimulation for obsessive-compulsive disorder should be collaborative and somehow involve pediatric patients, there is disagreement about what this process enta
在美国食品和药物管理局人道主义设备豁免下,深部脑刺激被批准用于治疗成人难治性强迫症,研究表明其在减轻症状严重程度和改善生活质量方面的疗效。虽然类似的深部脑刺激治疗可以用于患有肌张力障碍的儿童患者,但目前还不能用于患有强迫症的儿童患者,尽管很快就会实现。儿童深部脑刺激的适应症越来越多,这一前景引发了一些伦理问题,涉及身体完整性、知情同意的能力以及儿科患者在决策过程中所扮演的角色。本研究的目的是征求和评估利益相关者(儿童、家长、临床医生)在潜在的儿童深部脑刺激治疗强迫症的背景下对儿童同意、自主性和身体完整性的看法。方法采用半结构化访谈法,对21例儿童强迫症患者、19例14 ~ 18岁儿童强迫症护理人员和25例有治疗难治性强迫症经验的临床医生进行访谈。访谈在MAXQDA 2018和2020软件中进行转录和编码,并进行主题内容分析,以分离和比较特定主题。结果:在所有三个利益相关者群体中,大多数受访者(74%,48/65)表示,决策过程应该是协作的,每个人都应该参与(临床医生:84%或21/25,护理人员:71%或15/21,患者:63%或12/19)。我们确定了受访者对谁应该在不同意的情况下拥有最终发言权的看法之间的分歧(38%或25/65赞成患者,35%或23/65赞成护理人员)。受访者之间也出现了关于与深部脑刺激决策相关的成熟度的分歧,45%(29/65)赞成发育成熟度(年龄/生理发育),45%(29/65)赞成决策成熟度(理解和权衡信息的能力)。大多数临床医生表示,在没有获得患者同意的情况下(80%或20/25),他们不会继续进行深部脑刺激,一些人表示,只有在患者生活质量非常差和/或他们缺乏洞察力的情况下才会例外。护理人员和患者都对患者身体完整的权利表示了极大的尊重,67%的护理人员(14/21)和68%的患者(13/19)认为患者参与决策是合理的,特别是在侵犯身体完整的情况下。我们的研究结果表明,尽管利益相关者广泛同意儿科深部脑刺激治疗强迫症的决策过程应该是协作的,并以某种方式让儿科患者参与,但对于这一过程需要什么以及哪些因素决定患者参与这一过程,存在分歧。然而,人们一致认为,儿童有身体和大脑完整的权利,只有在极少数情况下才应该受到侵犯。
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引用次数: 0
Health policy narratives contributing to health inequities experienced by people with intellectual/developmental disabilities: New evidence from COVID-19 卫生政策叙述助长了智力/发育障碍者所经历的卫生不平等:来自COVID-19的新证据
Q1 Arts and Humanities Pub Date : 2023-09-12 DOI: 10.1177/14777509231196704
Sandra Marquis, Renee O'Leary, Nilanga Aki Bandara, Jennifer Baumbusch
This paper discusses three cultural narratives that threaten the health of people with intellectual/developmental disabilities (IDD) and which have become more evident during the COVID-19 pandemic. These meta-narratives are the medical model of health/disability; the population health approach to health inequalities; and policies premised on the assumption of the importance of national economic growth as an incentive for reducing health inequalities. Evidence exists that health research is more likely to become policy if it fits within a medical model and addresses national economic growth. These two criteria are particularly problematic for people who have IDD. The paper also proposes a research model to facilitate the inclusion of IDD related issues in future policy regarding health inequalities.
本文讨论了威胁智力/发育障碍(IDD)患者健康的三种文化叙事,这些叙事在COVID-19大流行期间变得更加明显。这些元叙述是健康/残疾的医学模式;解决保健不平等问题的人口保健办法;政策的前提假设是国家经济增长的重要性是减少健康不平等的激励因素。有证据表明,如果健康研究符合医学模式并解决国家经济增长问题,那么它更有可能成为政策。这两个标准对缺乏症患者来说尤其成问题。本文还提出了一个研究模型,以促进将缺碘症相关问题纳入未来关于保健不平等的政策。
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引用次数: 0
Corrigendum to ‘Ethical challenges in clinical studies with adaptive design in oncology 肿瘤学适应性设计临床研究中的伦理挑战的勘误表
Q1 Arts and Humanities Pub Date : 2023-09-11 DOI: 10.1177/14777509231202190
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引用次数: 0
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Clinical Ethics
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