首页 > 最新文献

BMC Medical Ethics最新文献

英文 中文
Ethical concerns in caring for persons with anorexia nervosa: content analysis of a series of documentations from ethics consultations. 护理神经性厌食症患者的伦理问题:对一系列伦理咨询文件的内容分析。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-10-01 DOI: 10.1186/s12910-024-01101-4
Anna Lisa Westermair, Stella Reiter-Theil, Sebastian Wäscher, Manuel Trachsel

Background: Caring for patients with anorexia nervosa (AN) is associated with high levels of moral distress among healthcare professionals. The main moral conflict has been posited to be between applying coercion to prevent serious complications such as premature death and accepting treatment refusals. However, empirical evidence on this topic is scarce.

Methods: We identified all 19 documentations of ethics consultations (ECs) in the context of AN from one clinical ethics support service in Switzerland. These documentations were coded with a sequential deductive-inductive approach and the code system was interpreted in a case-based manner. Here, we present findings on patient characteristics and ethical concerns.

Findings: The ECs typically concerned an intensely pretreated, extremely underweight AN patient endangering herself by refusing the proposed treatment. In addition to the justifiability of coercion, frequent ethical concerns were whether further coerced treatment aimed at weight gain would be ineffective or even harmful, evidencing uncertainty about beneficence and non-maleficence and a conflict between these principles. Discussed options included harm reduction (e.g. psychotherapy without weight gain requirements) and palliation (e.g. initiating end-of-life care), the appropriateness of which were ethical concerns in themselves. Overall, nine different types of conflicts between or uncertainties regarding ethical principles were identified with a median of eight per case.

Conclusions: Ethical concerns in caring for persons with AN are diverse and complex. To deal with uncertainty about and conflict between respect for autonomy, beneficence and non-maleficence, healthcare professionals consider non-curative approaches. However, currently, uncertainty around general justifiability, eligibility criteria, and concrete protocols hinders their adoption.

背景:医护人员在护理神经性厌食症(AN)患者的过程中会面临很大的道德压力。主要的道德冲突被认为是为防止过早死亡等严重并发症而采取强制措施与接受治疗拒绝之间的冲突。然而,有关这一主题的实证证据却很少:我们从瑞士的一家临床伦理支持服务机构中找到了所有 19 份关于 AN 的伦理咨询(EC)文件。我们采用演绎-归纳的顺序方法对这些文件进行了编码,并以病例为基础对编码系统进行了解释。在此,我们将介绍有关患者特征和伦理问题的研究结果:EC通常涉及一名接受过严格预处理、体重极度不足的AN患者因拒绝建议的治疗而危及自身。除了强迫治疗的合理性外,经常出现的伦理问题还包括进一步的强迫治疗是否会对体重增加无效甚至有害,这证明了受益原则和非受益原则的不确定性以及这些原则之间的冲突。讨论过的方案包括减少伤害(如不要求体重增加的心理治疗)和缓解(如启动临终关怀),这些方案是否合适本身就是伦理问题。总体而言,共发现了九种不同类型的伦理原则冲突或不确定性,每个病例的中位数为八种:护理 AN 患者的伦理问题多种多样,十分复杂。为了应对尊重自主性、受益性和非受益性之间的不确定性和冲突,医护人员会考虑采取非治疗性的方法。然而,目前在一般合理性、资格标准和具体方案方面的不确定性阻碍了这些方法的采用。
{"title":"Ethical concerns in caring for persons with anorexia nervosa: content analysis of a series of documentations from ethics consultations.","authors":"Anna Lisa Westermair, Stella Reiter-Theil, Sebastian Wäscher, Manuel Trachsel","doi":"10.1186/s12910-024-01101-4","DOIUrl":"10.1186/s12910-024-01101-4","url":null,"abstract":"<p><strong>Background: </strong>Caring for patients with anorexia nervosa (AN) is associated with high levels of moral distress among healthcare professionals. The main moral conflict has been posited to be between applying coercion to prevent serious complications such as premature death and accepting treatment refusals. However, empirical evidence on this topic is scarce.</p><p><strong>Methods: </strong>We identified all 19 documentations of ethics consultations (ECs) in the context of AN from one clinical ethics support service in Switzerland. These documentations were coded with a sequential deductive-inductive approach and the code system was interpreted in a case-based manner. Here, we present findings on patient characteristics and ethical concerns.</p><p><strong>Findings: </strong>The ECs typically concerned an intensely pretreated, extremely underweight AN patient endangering herself by refusing the proposed treatment. In addition to the justifiability of coercion, frequent ethical concerns were whether further coerced treatment aimed at weight gain would be ineffective or even harmful, evidencing uncertainty about beneficence and non-maleficence and a conflict between these principles. Discussed options included harm reduction (e.g. psychotherapy without weight gain requirements) and palliation (e.g. initiating end-of-life care), the appropriateness of which were ethical concerns in themselves. Overall, nine different types of conflicts between or uncertainties regarding ethical principles were identified with a median of eight per case.</p><p><strong>Conclusions: </strong>Ethical concerns in caring for persons with AN are diverse and complex. To deal with uncertainty about and conflict between respect for autonomy, beneficence and non-maleficence, healthcare professionals consider non-curative approaches. However, currently, uncertainty around general justifiability, eligibility criteria, and concrete protocols hinders their adoption.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11443878/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142360679","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Moral distress and protective work environment for healthcare workers during public health emergencies. 突发公共卫生事件中医护人员的精神压力和保护性工作环境。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-10-01 DOI: 10.1186/s12910-024-01098-w
K Bondjers, Alve K Glad, H Wøien, T Wentzel-Larsen, D Atar, S K Reitan, L A Rosseland, J A Zwart, G Dyb, S Ø Stensland

Background: Public health emergencies, such as the Covid-19 pandemic, put great pressure on healthcare workers (HCW) across the world, possibly increasing the risk of experiencing ethically challenging situations (ECS). Whereas experiencing ECS as a HCW in such situations is likely unavoidable, mitigation of their adverse effects (e.g., moral distress) is necessary to reduce the risk of long-term negative consequences. One possible route of mitigation of these effects is via work environmental factors.

Objectives: The current study aimed to examine: [1] risk factors associated with ECS among HCW [2], intensity of moral distress associated with ECS across various occupational factors (i.e., profession, degree of exposure to patients with Covid-19), and [3] the impact of work environmental factors on this association, in a sample of HCW during the pandemic.

Methods: We employed multiple logistic and linear regression to self-report data from 977 HCWs at four Norwegian hospitals responding to a survey at the fourth wave of the pandemic.

Results: About half of HCW in this study had experienced ECS during the pandemic, and levels of moral distress associated with such were higher than in previous studies using similar assessment methods. Younger age, female sex, geographical work area (mid-north of Norway), and profession (nurse) were all associated with higher odds (range of OR: 1.30-2.59) of experiencing ECS, as were direct contact with patients with Covid-19. Among those participants who reported that they had experienced ECS during the pandemic, moral distress levels when recalling those situations were moderate (Mean 5.7 on a 0-10 scale). Men reported somewhat lower intensity of moral distress (partial eta squared; ηp2 = 0.02). Reporting a manageable workload (ηp2 = 0.02), and greater opportunity to work according to best practice (ηp2 = 0.02), were associated with lower levels of moral distress.

Conclusions: Our findings suggest that moral distress could potentially be mitigated on an organizational level, particularly by focusing on ensuring a manageable workload, and an ability to work according to best practice. To build sustainable healthcare systems robust enough to withstand future public health emergencies, healthcare organizations should implement measures to facilitate these aspects of HCWs' work environment.

背景:公共卫生突发事件(如 Covid-19 大流行病)给世界各地的医护人员(HCW)带来了巨大压力,可能会增加遭遇伦理挑战情境(ECS)的风险。作为一名医护人员,在这种情况下经历伦理挑战可能是不可避免的,但有必要减轻其不利影响(如道德困扰),以降低长期负面后果的风险。减轻这些影响的一个可能途径是通过工作环境因素:本研究旨在探讨[方法:我们采用多元逻辑线性回归法,分析了在大流行期间,高危职业工作者中与 ECS 相关的风险因素[1]、不同职业因素(即职业、接触 Covid-19 患者的程度)下与 ECS 相关的精神痛苦强度,以及[3]工作环境因素对这种相关性的影响:我们采用多元逻辑和线性回归方法,对挪威四家医院的977名医护人员的自我报告数据进行了分析:在这项研究中,约有一半的医护人员在大流行期间经历过ECS,而与ECS相关的精神痛苦程度高于以往采用类似评估方法进行的研究。较年轻的年龄、女性性别、工作地区(挪威中北部)和职业(护士)都与较高的经历ECS几率(OR范围:1.30-2.59)相关,直接接触Covid-19患者也与较高的几率相关。在那些报告在大流行期间经历过 ECS 的参与者中,他们在回忆这些情况时的道德困扰程度为中等(0-10 分,平均值为 5.7)。男性的道德困扰程度略低(部分 eta 平方;ηp2 = 0.02)。报告工作量可控(ηp2 = 0.02)以及有更多机会按照最佳做法工作(ηp2 = 0.02)与较低的道德困扰水平相关:我们的研究结果表明,道德困扰有可能在组织层面上得到缓解,特别是通过重点确保可管理的工作量和按照最佳实践工作的能力。为了建立足以抵御未来公共卫生突发事件的可持续医疗保健系统,医疗保健组织应采取措施,为医护人员的工作环境提供这些方面的便利。
{"title":"Moral distress and protective work environment for healthcare workers during public health emergencies.","authors":"K Bondjers, Alve K Glad, H Wøien, T Wentzel-Larsen, D Atar, S K Reitan, L A Rosseland, J A Zwart, G Dyb, S Ø Stensland","doi":"10.1186/s12910-024-01098-w","DOIUrl":"10.1186/s12910-024-01098-w","url":null,"abstract":"<p><strong>Background: </strong>Public health emergencies, such as the Covid-19 pandemic, put great pressure on healthcare workers (HCW) across the world, possibly increasing the risk of experiencing ethically challenging situations (ECS). Whereas experiencing ECS as a HCW in such situations is likely unavoidable, mitigation of their adverse effects (e.g., moral distress) is necessary to reduce the risk of long-term negative consequences. One possible route of mitigation of these effects is via work environmental factors.</p><p><strong>Objectives: </strong>The current study aimed to examine: [1] risk factors associated with ECS among HCW [2], intensity of moral distress associated with ECS across various occupational factors (i.e., profession, degree of exposure to patients with Covid-19), and [3] the impact of work environmental factors on this association, in a sample of HCW during the pandemic.</p><p><strong>Methods: </strong>We employed multiple logistic and linear regression to self-report data from 977 HCWs at four Norwegian hospitals responding to a survey at the fourth wave of the pandemic.</p><p><strong>Results: </strong>About half of HCW in this study had experienced ECS during the pandemic, and levels of moral distress associated with such were higher than in previous studies using similar assessment methods. Younger age, female sex, geographical work area (mid-north of Norway), and profession (nurse) were all associated with higher odds (range of OR: 1.30-2.59) of experiencing ECS, as were direct contact with patients with Covid-19. Among those participants who reported that they had experienced ECS during the pandemic, moral distress levels when recalling those situations were moderate (Mean 5.7 on a 0-10 scale). Men reported somewhat lower intensity of moral distress (partial eta squared; ηp<sup>2</sup> = 0.02). Reporting a manageable workload (ηp<sup>2</sup> = 0.02), and greater opportunity to work according to best practice (ηp<sup>2</sup> = 0.02), were associated with lower levels of moral distress.</p><p><strong>Conclusions: </strong>Our findings suggest that moral distress could potentially be mitigated on an organizational level, particularly by focusing on ensuring a manageable workload, and an ability to work according to best practice. To build sustainable healthcare systems robust enough to withstand future public health emergencies, healthcare organizations should implement measures to facilitate these aspects of HCWs' work environment.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11443852/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142360680","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The ethical requirement of explainability for AI-DSS in healthcare: a systematic review of reasons. 医疗保健领域的人工智能--信息系统的可解释性伦理要求:对原因的系统性审查。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-10-01 DOI: 10.1186/s12910-024-01103-2
Nils Freyer, Dominik Groß, Myriam Lipprandt

Background: Despite continuous performance improvements, especially in clinical contexts, a major challenge of Artificial Intelligence based Decision Support Systems (AI-DSS) remains their degree of epistemic opacity. The conditions of and the solutions for the justified use of the occasionally unexplainable technology in healthcare are an active field of research. In March 2024, the European Union agreed upon the Artificial Intelligence Act (AIA), requiring medical AI-DSS to be ad-hoc explainable or to use post-hoc explainability methods. The ethical debate does not seem to settle on this requirement yet. This systematic review aims to outline and categorize the positions and arguments in the ethical debate.

Methods: We conducted a literature search on PubMed, BASE, and Scopus for English-speaking scientific peer-reviewed publications from 2016 to 2024. The inclusion criterion was to give explicit requirements of explainability for AI-DSS in healthcare and reason for it. Non-domain-specific documents, as well as surveys, reviews, and meta-analyses were excluded. The ethical requirements for explainability outlined in the documents were qualitatively analyzed with respect to arguments for the requirement of explainability and the required level of explainability.

Results: The literature search resulted in 1662 documents; 44 documents were included in the review after eligibility screening of the remaining full texts. Our analysis showed that 17 records argue in favor of the requirement of explainable AI methods (xAI) or ad-hoc explainable models, providing 9 categories of arguments. The other 27 records argued against a general requirement, providing 11 categories of arguments. Also, we found that 14 works advocate the need for context-dependent levels of explainability, as opposed to 30 documents, arguing for context-independent, absolute standards.

Conclusions: The systematic review of reasons shows no clear agreement on the requirement of post-hoc explainability methods or ad-hoc explainable models for AI-DSS in healthcare. The arguments found in the debate were referenced and responded to from different perspectives, demonstrating an interactive discourse. Policymakers and researchers should watch the development of the debate closely. Conversely, ethicists should be well informed by empirical and technical research, given the frequency of advancements in the field.

背景:尽管人工智能决策支持系统(AI-DSS)的性能不断提高,尤其是在临床环境中,但其面临的一个主要挑战仍然是认识上的不透明性。在医疗保健领域合理使用偶尔无法解释的技术的条件和解决方案是一个活跃的研究领域。2024 年 3 月,欧盟就《人工智能法案》(AIA)达成一致,要求医疗人工智能-DSS 必须是可临时解释的,或使用可事后解释的方法。关于这一要求的伦理辩论似乎尚未尘埃落定。本系统综述旨在概述伦理辩论中的立场和论点,并对其进行分类:我们在 PubMed、BASE 和 Scopus 上对 2016 年至 2024 年的英语科学同行评审出版物进行了文献检索。纳入标准是对医疗保健中的人工智能--信息系统的可解释性提出明确要求,并说明理由。非特定领域的文件以及调查、综述和荟萃分析均被排除在外。根据可解释性要求的论据和所需的可解释性水平,对文献中概述的可解释性伦理要求进行了定性分析:文献检索结果为 1662 篇文献;在对其余全文进行资格筛选后,44 篇文献被纳入综述。我们的分析表明,17 篇文献支持可解释人工智能方法(xAI)或临时可解释模型的要求,提供了 9 类论据。其他 27 条记录反对一般要求,提供了 11 类论据。此外,我们还发现有 14 篇作品主张需要根据上下文确定可解释性的水平,而有 30 篇文献则主张与上下文无关的绝对标准:对理由的系统性回顾表明,在医疗保健领域的人工智能数据系统是否需要事后可解释性方法或临时可解释性模型的问题上,并没有达成明确的一致意见。辩论中发现的论点从不同的角度进行了引用和回应,显示了一种互动式的讨论。政策制定者和研究人员应密切关注辩论的发展。反之,鉴于该领域的频繁进步,伦理学家应充分了解经验和技术研究。
{"title":"The ethical requirement of explainability for AI-DSS in healthcare: a systematic review of reasons.","authors":"Nils Freyer, Dominik Groß, Myriam Lipprandt","doi":"10.1186/s12910-024-01103-2","DOIUrl":"10.1186/s12910-024-01103-2","url":null,"abstract":"<p><strong>Background: </strong>Despite continuous performance improvements, especially in clinical contexts, a major challenge of Artificial Intelligence based Decision Support Systems (AI-DSS) remains their degree of epistemic opacity. The conditions of and the solutions for the justified use of the occasionally unexplainable technology in healthcare are an active field of research. In March 2024, the European Union agreed upon the Artificial Intelligence Act (AIA), requiring medical AI-DSS to be ad-hoc explainable or to use post-hoc explainability methods. The ethical debate does not seem to settle on this requirement yet. This systematic review aims to outline and categorize the positions and arguments in the ethical debate.</p><p><strong>Methods: </strong>We conducted a literature search on PubMed, BASE, and Scopus for English-speaking scientific peer-reviewed publications from 2016 to 2024. The inclusion criterion was to give explicit requirements of explainability for AI-DSS in healthcare and reason for it. Non-domain-specific documents, as well as surveys, reviews, and meta-analyses were excluded. The ethical requirements for explainability outlined in the documents were qualitatively analyzed with respect to arguments for the requirement of explainability and the required level of explainability.</p><p><strong>Results: </strong>The literature search resulted in 1662 documents; 44 documents were included in the review after eligibility screening of the remaining full texts. Our analysis showed that 17 records argue in favor of the requirement of explainable AI methods (xAI) or ad-hoc explainable models, providing 9 categories of arguments. The other 27 records argued against a general requirement, providing 11 categories of arguments. Also, we found that 14 works advocate the need for context-dependent levels of explainability, as opposed to 30 documents, arguing for context-independent, absolute standards.</p><p><strong>Conclusions: </strong>The systematic review of reasons shows no clear agreement on the requirement of post-hoc explainability methods or ad-hoc explainable models for AI-DSS in healthcare. The arguments found in the debate were referenced and responded to from different perspectives, demonstrating an interactive discourse. Policymakers and researchers should watch the development of the debate closely. Conversely, ethicists should be well informed by empirical and technical research, given the frequency of advancements in the field.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11443763/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142360681","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Researchers experience and views on participants' comprehension of informed consent in clinical trials in Malawi: a descriptive qualitative study. 研究人员对马拉维临床试验参与者理解知情同意书的经验和看法:一项描述性定性研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-09-27 DOI: 10.1186/s12910-024-01100-5
Dorothy Maxwell Kazembe, Yimtubezinash Woldeamanuel, Solomon Mequanente Abay

Background: Informed consent is the cornerstone of research ethics. One of its goals is that participants enter research with an understanding of what their participation entails. This paper is a study on how researchers understand the informed consent process. Previous studies have looked at this topic from a research participant perspective. However, few studies focus on the perspectives of the researchers. Therefore, this is an important paper that highlights an important issue (informed consent) from the perspective of those who administer it during research.

Methods: In-depth interviews were conducted with 18 researchers from 3 different research centers in Malawi working in clinical trials. The data was analyzed using open code utilizing the thematic approach to qualitative data.

Results: This study identified that researchers have good awareness of the role of informed consent, how important it is for participants to understand the given information and ways to adjust their practice accordingly when obtaining it in order to enhance participant understanding. According to the research staff, most participants do not really understand all the concepts of the study at the initial visit, they gain more understanding during subsequent visits. It was emphasized that the best method of facilitating informed consent is reading the informed consent to the participant, thus a face-to-face conversation. Long and complex informed consent was identified as one of the barriers to participant understanding of the informed consent. Shortening the informed consent form and having additional conversation with the participants was suggested as one way of improving participant comprehension.

Conclusion: Most of the participants understand much of the information during subsequent visits as you keep reminding them since informed consent is an ongoing process. Existing relationship or trust between a participant and a researcher, may influence participants' decision and misguide their understanding on the purpose of the study. Adequate time should be allocated to informed consent discussions. Shortening the informed consent forms and having additional conversations with potential participants may help improve their understanding.

背景:知情同意是研究伦理的基石。其目标之一是让参与者在参与研究时了解其参与的意义。本文研究的是研究人员如何理解知情同意程序。以往的研究都是从研究参与者的角度来探讨这个问题。然而,很少有研究关注研究人员的视角。因此,这是一篇重要的论文,从研究过程中执行者的角度强调了一个重要问题(知情同意):对马拉维 3 个不同研究中心的 18 名临床试验研究人员进行了深入访谈。采用定性数据的主题方法,使用开放代码对数据进行分析:本研究发现,研究人员对知情同意书的作用、参与者理解所提供信息的重要性以及在获取信息时相应调整做法以增强参与者理解的方法有很好的认识。据研究人员称,大多数参与者在初次访问时并不能真正理解研究的所有概念,他们在随后的访问中会加深理解。研究人员强调,促进知情同意的最佳方法是向参与者宣读知情同意书,从而进行面对面的交谈。冗长复杂的知情同意书被认为是阻碍受试者理解知情同意书的障碍之一。建议缩短知情同意书的篇幅,并与参与者进行更多的交谈,以提高参与者的理解能力:结论:由于知情同意是一个持续的过程,大多数参与者在随后的访问中都能理解许多信息,因为你会不断提醒他们。参与者与研究人员之间现有的关系或信任可能会影响参与者的决定,并误导他们对研究目的的理解。应为知情同意讨论分配充足的时间。缩短知情同意书的篇幅并与潜在参与者进行更多的交谈可能有助于提高他们的理解。
{"title":"Researchers experience and views on participants' comprehension of informed consent in clinical trials in Malawi: a descriptive qualitative study.","authors":"Dorothy Maxwell Kazembe, Yimtubezinash Woldeamanuel, Solomon Mequanente Abay","doi":"10.1186/s12910-024-01100-5","DOIUrl":"https://doi.org/10.1186/s12910-024-01100-5","url":null,"abstract":"<p><strong>Background: </strong>Informed consent is the cornerstone of research ethics. One of its goals is that participants enter research with an understanding of what their participation entails. This paper is a study on how researchers understand the informed consent process. Previous studies have looked at this topic from a research participant perspective. However, few studies focus on the perspectives of the researchers. Therefore, this is an important paper that highlights an important issue (informed consent) from the perspective of those who administer it during research.</p><p><strong>Methods: </strong>In-depth interviews were conducted with 18 researchers from 3 different research centers in Malawi working in clinical trials. The data was analyzed using open code utilizing the thematic approach to qualitative data.</p><p><strong>Results: </strong>This study identified that researchers have good awareness of the role of informed consent, how important it is for participants to understand the given information and ways to adjust their practice accordingly when obtaining it in order to enhance participant understanding. According to the research staff, most participants do not really understand all the concepts of the study at the initial visit, they gain more understanding during subsequent visits. It was emphasized that the best method of facilitating informed consent is reading the informed consent to the participant, thus a face-to-face conversation. Long and complex informed consent was identified as one of the barriers to participant understanding of the informed consent. Shortening the informed consent form and having additional conversation with the participants was suggested as one way of improving participant comprehension.</p><p><strong>Conclusion: </strong>Most of the participants understand much of the information during subsequent visits as you keep reminding them since informed consent is an ongoing process. Existing relationship or trust between a participant and a researcher, may influence participants' decision and misguide their understanding on the purpose of the study. Adequate time should be allocated to informed consent discussions. Shortening the informed consent forms and having additional conversations with potential participants may help improve their understanding.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11438391/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142332786","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Biobanking, digital health and privacy: the choices of 1410 volunteers and neurological patients regarding limitations on use of data and biological samples, return of results and sharing. 生物库、数字健康和隐私:1410 名志愿者和神经病患者对数据和生物样本使用限制、结果返还和共享的选择。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-09-27 DOI: 10.1186/s12910-024-01102-3
Emilia Giannella, Josep Miquel Bauça, Simona Gabriella Di Santo, Stefano Brunelli, Elisabetta Costa, Sergio Di Fonzo, Francesca Romana Fusco, Antonio Perre, Valerio Pisani, Giorgia Presicce, Francesca Spanedda, Giorgio Scivoletto, Rita Formisano, Maria Grazia Grasso, Stefano Paolucci, Domenico De Angelis, Giulia Sancesario

Background: The growing diffusion of artificial intelligence, data science and digital health has highlighted the role of collection of data and biological samples, thus raising legal and ethical concerns regarding its use and dissemination. Further, the expansion of biobanking, from the basic collection of frozen specimens to the virtual biobanks of specimens and associated data that exist today, has given a revolutionary potential on healthcare systems, particularly in the field of neurological diseases, due to the inaccessibility of central nervous system and the need of non-invasive investigation approaches. Informed Consent (IC) is considered mandatory in all research studies and specimen collections, and must specifically take into account the ethical respect to the individuals to whom the used biological material and data belong.

Methods: We evaluated the attitudes of patients with neurological diseases (NP) and healthy volunteers (HV) towards the donation of biological samples to a biobank for future research studies on neurological diseases, and limitations on the use of data, related to the requirements set by the General Data Protection Regulation (GDPR). The study involved a total of 1454 subjects, including 502 HVs and 952 NPs, recruited at Santa Lucia Foundation IRCCS, Rome, from 2020 to 2024.

Results: We found that (i) almost all subjects agreed with the participation in biobanking (ii) and authorization to genetic studies (HV = 99.1%; NP = 98.3%); Regarding the return of results, (iii) we found a statistically significant difference between NP and HV, the latter preferring not to be informed of potential results (HV = 43%; NP = 11.3%; p < 0.0001); (iv) a small number limited the sharing inside European Union (EU) (HV = 4.6%; NP = 6.6%), whereas patients were more likely to refuse transfer outside EU (HV = 7.4%; NP = 10.7% p = 0.05); (v) nearly all patients agreed with the use of additional health data from EMR for research purposes (98.9%).

Conclusions: Consent for the donation of material for research purposes is crucial for biobanking and biomedical research studies that use biological material of human origin. Here, we have shown that choices regarding participation in a neurological biobank can be different between HVs and NPs, even if the benefit for research and scientific progress is recognized. NP have a strong interest in being informed of possible results but limit sharing of samples, highlighting a perception of greater individual or relative benefit, while HV prefer a wide dissemination and sharing of data but not to have the return of the results, favoring a possible benefit for society and knowledge. The results underline the need to carefully manage biological material and data collected in biobanks, in compliance with the GDPR and the specific requests of donors.

背景:人工智能、数据科学和数字医疗的日益普及凸显了数据和生物样本收集的作用,从而引发了对其使用和传播的法律和伦理问题的关注。此外,生物银行的扩展,从基本的冷冻标本收集到今天的标本和相关数据的虚拟生物银行,给医疗保健系统带来了革命性的潜力,特别是在神经系统疾病领域,因为中枢神经系统无法进入,需要非侵入性的调查方法。知情同意(IC)被认为是所有研究和标本采集中的强制性规定,必须特别考虑到对所使用的生物材料和数据所属个人的伦理尊重:我们评估了神经系统疾病患者(NP)和健康志愿者(HV)对向生物库捐赠生物样本用于未来神经系统疾病研究的态度,以及根据《通用数据保护条例》(GDPR)的要求对数据使用的限制。研究共涉及 1454 名受试者,其中包括 502 名高血压患者和 952 名非高血压患者,这些受试者于 2020 年至 2024 年期间在罗马圣露西亚基金会 IRCCS 征募:我们发现:(i) 几乎所有受试者都同意参与生物库(ii)和授权基因研究(HV = 99.1%;NP = 98.3%);关于结果的返还,(iii) 我们发现 NP 和 HV 之间存在显著的统计学差异,后者倾向于不被告知潜在的结果(HV = 43%;NP = 11.3%;P 结论:同意为研究目的捐赠材料对于使用人类来源生物材料的生物库和生物医学研究至关重要。在此,我们表明,即使研究和科学进步的益处得到认可,高危人群和非高危人群对参与神经病学生物库的选择也会有所不同。NP 对获知可能的结果有浓厚的兴趣,但限制样本的共享,这凸显了他们对更大的个人利益或相对利益的看法;而 HV 则倾向于广泛传播和共享数据,但不希望获得结果的回报,他们更倾向于为社会和知识带来可能的利益。研究结果表明,有必要按照《信息权保护条例》(GDPR)和捐献者的具体要求,谨慎管理生物库中收集的生物材料和数据。
{"title":"Biobanking, digital health and privacy: the choices of 1410 volunteers and neurological patients regarding limitations on use of data and biological samples, return of results and sharing.","authors":"Emilia Giannella, Josep Miquel Bauça, Simona Gabriella Di Santo, Stefano Brunelli, Elisabetta Costa, Sergio Di Fonzo, Francesca Romana Fusco, Antonio Perre, Valerio Pisani, Giorgia Presicce, Francesca Spanedda, Giorgio Scivoletto, Rita Formisano, Maria Grazia Grasso, Stefano Paolucci, Domenico De Angelis, Giulia Sancesario","doi":"10.1186/s12910-024-01102-3","DOIUrl":"https://doi.org/10.1186/s12910-024-01102-3","url":null,"abstract":"<p><strong>Background: </strong>The growing diffusion of artificial intelligence, data science and digital health has highlighted the role of collection of data and biological samples, thus raising legal and ethical concerns regarding its use and dissemination. Further, the expansion of biobanking, from the basic collection of frozen specimens to the virtual biobanks of specimens and associated data that exist today, has given a revolutionary potential on healthcare systems, particularly in the field of neurological diseases, due to the inaccessibility of central nervous system and the need of non-invasive investigation approaches. Informed Consent (IC) is considered mandatory in all research studies and specimen collections, and must specifically take into account the ethical respect to the individuals to whom the used biological material and data belong.</p><p><strong>Methods: </strong>We evaluated the attitudes of patients with neurological diseases (NP) and healthy volunteers (HV) towards the donation of biological samples to a biobank for future research studies on neurological diseases, and limitations on the use of data, related to the requirements set by the General Data Protection Regulation (GDPR). The study involved a total of 1454 subjects, including 502 HVs and 952 NPs, recruited at Santa Lucia Foundation IRCCS, Rome, from 2020 to 2024.</p><p><strong>Results: </strong>We found that (i) almost all subjects agreed with the participation in biobanking (ii) and authorization to genetic studies (HV = 99.1%; NP = 98.3%); Regarding the return of results, (iii) we found a statistically significant difference between NP and HV, the latter preferring not to be informed of potential results (HV = 43%; NP = 11.3%; p < 0.0001); (iv) a small number limited the sharing inside European Union (EU) (HV = 4.6%; NP = 6.6%), whereas patients were more likely to refuse transfer outside EU (HV = 7.4%; NP = 10.7% p = 0.05); (v) nearly all patients agreed with the use of additional health data from EMR for research purposes (98.9%).</p><p><strong>Conclusions: </strong>Consent for the donation of material for research purposes is crucial for biobanking and biomedical research studies that use biological material of human origin. Here, we have shown that choices regarding participation in a neurological biobank can be different between HVs and NPs, even if the benefit for research and scientific progress is recognized. NP have a strong interest in being informed of possible results but limit sharing of samples, highlighting a perception of greater individual or relative benefit, while HV prefer a wide dissemination and sharing of data but not to have the return of the results, favoring a possible benefit for society and knowledge. The results underline the need to carefully manage biological material and data collected in biobanks, in compliance with the GDPR and the specific requests of donors.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11437646/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142332785","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Correction: For, against, and beyond: healthcare professionals' positions on medical assistance in dying in Spain. 更正:支持、反对和超越:西班牙医护人员对临终医疗协助的立场。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-09-23 DOI: 10.1186/s12910-024-01097-x
Iris Parra Jounou, Rosana Triviño-Caballero, Maite Cruz-Piqueras
{"title":"Correction: For, against, and beyond: healthcare professionals' positions on medical assistance in dying in Spain.","authors":"Iris Parra Jounou, Rosana Triviño-Caballero, Maite Cruz-Piqueras","doi":"10.1186/s12910-024-01097-x","DOIUrl":"10.1186/s12910-024-01097-x","url":null,"abstract":"","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11418186/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142301492","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
What do suicide loss survivors think of physician-assisted suicide: a comparative analysis of suicide loss survivors and the general population in Germany 自杀幸存者如何看待医生协助自杀:对德国自杀幸存者和普通民众的比较分析
IF 2.7 1区 哲学 Q1 ETHICS Pub Date : 2024-09-19 DOI: 10.1186/s12910-024-01099-9
Laura Hofmann, Louisa Spieß, Birgit Wagner
Physician-assisted suicide (PAS) and voluntary euthanasia remain highly debated topics in society, drawing attention due to their ethical, legal, and emotional complexities. Within this debate, the loss of a loved one through suicide may shape the attitudes of survivors, resulting in more or less favorable attitudes towards this topic. This study aims to explore and compare the attitudes towards PAS and voluntary euthanasia in a population of suicide loss survivors and the general population, while also considering socio-demographic factors. A total of 529 participants, 168 of whom were survivors of suicide loss, completed an online questionnaire on their attitudes (NOBAS) and opinions (open response format) towards PAS and voluntary euthanasia, as well as regarding their legalization in Germany. The analysis consisted of both quantitative and qualitative components. The entire sample showed positive attitudes towards PAS and voluntary euthanasia in terminally ill persons. Participants were more divided in their attitudes towards PAS in the case of a mental health disorder. Individuals without experienced suicide loss were more liberal regarding legalization in Germany and were more likely to understand the wish for PAS. Survivors of suicide loss were mainly concerned about the consequences for relatives. However, differences between both groups are small. The experience of a loss by suicide influences attitudes towards PAS and voluntary euthanasia. Both groups showed an accepting attitude towards PAS and voluntary euthanasia, but also expressed concerns and fears regarding easy accessibility and consequences for grieving relatives.
医生协助自杀(PAS)和自愿安乐死仍然是社会上备受争议的话题,因其在伦理、法律和情感方面的复杂性而备受关注。在这场辩论中,因自杀而失去亲人的经历可能会影响幸存者的态度,从而导致他们对这一话题持或多或少的赞成态度。本研究旨在探讨和比较自杀丧亲幸存者和普通人群对临终关怀和自愿安乐死的态度,同时考虑社会人口因素。共有 529 名参与者(其中 168 人是自杀幸存者)填写了一份在线问卷,内容涉及他们对德国允许自杀和自愿安乐死及其合法化的态度(NOBAS)和观点(开放式回答格式)。分析包括定量和定性两个部分。所有样本都对临终病人的临时安乐死和自愿安乐死持积极态度。对于精神疾病患者,参与者的态度较为分歧。没有自杀经历的人对德国的自杀合法化持更开明的态度,也更容易理解安乐死的愿望。有过自杀经历的幸存者则主要担心会对亲属造成影响。然而,这两个群体之间的差异很小。自杀丧生的经历会影响人们对临终关怀和自愿安乐死的态度。两组人都对临终关怀和自愿安乐死持接受态度,但也表达了对容易获得性和给悲伤的亲属带来的后果的担忧和恐惧。
{"title":"What do suicide loss survivors think of physician-assisted suicide: a comparative analysis of suicide loss survivors and the general population in Germany","authors":"Laura Hofmann, Louisa Spieß, Birgit Wagner","doi":"10.1186/s12910-024-01099-9","DOIUrl":"https://doi.org/10.1186/s12910-024-01099-9","url":null,"abstract":"Physician-assisted suicide (PAS) and voluntary euthanasia remain highly debated topics in society, drawing attention due to their ethical, legal, and emotional complexities. Within this debate, the loss of a loved one through suicide may shape the attitudes of survivors, resulting in more or less favorable attitudes towards this topic. This study aims to explore and compare the attitudes towards PAS and voluntary euthanasia in a population of suicide loss survivors and the general population, while also considering socio-demographic factors. A total of 529 participants, 168 of whom were survivors of suicide loss, completed an online questionnaire on their attitudes (NOBAS) and opinions (open response format) towards PAS and voluntary euthanasia, as well as regarding their legalization in Germany. The analysis consisted of both quantitative and qualitative components. The entire sample showed positive attitudes towards PAS and voluntary euthanasia in terminally ill persons. Participants were more divided in their attitudes towards PAS in the case of a mental health disorder. Individuals without experienced suicide loss were more liberal regarding legalization in Germany and were more likely to understand the wish for PAS. Survivors of suicide loss were mainly concerned about the consequences for relatives. However, differences between both groups are small. The experience of a loss by suicide influences attitudes towards PAS and voluntary euthanasia. Both groups showed an accepting attitude towards PAS and voluntary euthanasia, but also expressed concerns and fears regarding easy accessibility and consequences for grieving relatives.","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142255765","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Assessment of decision-making autonomy in chronic pain patients: a pilot study 评估慢性疼痛患者的自主决策能力:一项试点研究
IF 2.7 1区 哲学 Q1 ETHICS Pub Date : 2024-09-18 DOI: 10.1186/s12910-024-01096-y
Marguerite d’Ussel, Emmanuelle Sacco, Nathan Moreau, Julien Nizard, Guillaume Durand
Patient decision-making autonomy refers to the patients’ ability to freely exert their own choices and make their own decisions, given sufficient resources and information to do so. In pain medicine, it is accepted that appropriate beneficial management aims to propose an individualized treatment plan shared with the patients, as agents, to help them live as autonomously as possible with their pain. However, are patients in chronic pain centers sufficiently autonomous to participate in the therapeutic decisions that concern them? As this question still remains unanswered, a pilot study was set up to that aim. Over a 2-month period, first-time patients within a tertiary multidisciplinary pain center underwent a systematic evaluation of their autonomy using the MacArthur Competence Assessment Tool for Treatment (MacCAT-T), considered the benchmark tool for measuring a patient’s ability to consent to treatment. Demographic data and pain characteristics of the patients were collected and their respective attending pain physicians were asked to clinically assess their patients’ degree of autonomy. Another physician, who had not participated in the initial patient evaluation, subsequently administered the MacCAT-T questionnaire to the same patients. Twenty-seven patients were included during the study period (21 women and 6 men), with an average age of 50 years. The average duration of pain was 8 years. Based on their clinical experience, the 4 different pain physicians in charge of these patients considered that out of 25 assessed patients, 22 of them (89%) had full decision-making capacity, with no deficit in autonomy. According to the MacCAT-T results, only 13 of these 25 patients (48%) had no deficit, while 7 (26%) had a major deficit in autonomy. The only patient characteristic that appeared to be related to autonomy was pain type, specifically nociplastic pain. The average time taken to complete the test was 20 min, and patients were very satisfied with the interview. Results from the present pilot study suggest that patients suffering from chronic pain do not appear to be entirely autonomous in their decision to consent to the proposed treatment plan according to the MacCAT-T questionnaire, and physicians seem to find it difficult to properly assess this competence in a clinical setting. Further studies with larger samples are needed to better evaluate this concept to improve the complex management of these patients.
患者决策自主权是指患者在有足够资源和信息的情况下,自由做出选择和决定的能力。在疼痛医学中,人们普遍认为,适当的有益管理旨在提出个性化的治疗方案,与作为代理人的患者共享,以帮助他们尽可能自主地与疼痛共存。然而,慢性疼痛中心的患者是否有足够的自主权来参与与他们相关的治疗决策?鉴于这一问题仍未得到解答,我们为此开展了一项试点研究。在为期两个月的时间里,一家三级多学科疼痛中心的首次就诊患者使用麦克阿瑟治疗能力评估工具(MacCAT-T)对其自主性进行了系统评估,该工具被认为是衡量患者同意治疗能力的基准工具。研究人员收集了患者的人口统计学数据和疼痛特征,并要求各自的疼痛主治医生对患者的自主程度进行临床评估。另一名未参与患者初步评估的医生随后对相同的患者进行了 MacCAT-T 问卷调查。研究期间共纳入了 27 名患者(21 名女性和 6 名男性),平均年龄为 50 岁。疼痛持续时间平均为 8 年。根据他们的临床经验,负责这些患者的 4 位不同的疼痛科医生认为,在 25 位接受评估的患者中,22 位(89%)具有完全的决策能力,自主性没有缺陷。根据 MacCAT-T 的结果,这 25 名患者中只有 13 人(48%)不存在自主能力缺陷,而 7 人(26%)存在严重的自主能力缺陷。唯一似乎与自主能力有关的患者特征是疼痛类型,特别是非痉挛性疼痛。完成测试的平均时间为 20 分钟,患者对访谈非常满意。本试验研究的结果表明,慢性疼痛患者似乎并不能完全自主地根据 MacCAT-T 问卷决定是否同意建议的治疗方案,而医生似乎也很难在临床环境中正确评估这种能力。为了更好地评估这一概念,改善对这些患者的复杂管理,还需要进行更多的样本研究。
{"title":"Assessment of decision-making autonomy in chronic pain patients: a pilot study","authors":"Marguerite d’Ussel, Emmanuelle Sacco, Nathan Moreau, Julien Nizard, Guillaume Durand","doi":"10.1186/s12910-024-01096-y","DOIUrl":"https://doi.org/10.1186/s12910-024-01096-y","url":null,"abstract":"Patient decision-making autonomy refers to the patients’ ability to freely exert their own choices and make their own decisions, given sufficient resources and information to do so. In pain medicine, it is accepted that appropriate beneficial management aims to propose an individualized treatment plan shared with the patients, as agents, to help them live as autonomously as possible with their pain. However, are patients in chronic pain centers sufficiently autonomous to participate in the therapeutic decisions that concern them? As this question still remains unanswered, a pilot study was set up to that aim. Over a 2-month period, first-time patients within a tertiary multidisciplinary pain center underwent a systematic evaluation of their autonomy using the MacArthur Competence Assessment Tool for Treatment (MacCAT-T), considered the benchmark tool for measuring a patient’s ability to consent to treatment. Demographic data and pain characteristics of the patients were collected and their respective attending pain physicians were asked to clinically assess their patients’ degree of autonomy. Another physician, who had not participated in the initial patient evaluation, subsequently administered the MacCAT-T questionnaire to the same patients. Twenty-seven patients were included during the study period (21 women and 6 men), with an average age of 50 years. The average duration of pain was 8 years. Based on their clinical experience, the 4 different pain physicians in charge of these patients considered that out of 25 assessed patients, 22 of them (89%) had full decision-making capacity, with no deficit in autonomy. According to the MacCAT-T results, only 13 of these 25 patients (48%) had no deficit, while 7 (26%) had a major deficit in autonomy. The only patient characteristic that appeared to be related to autonomy was pain type, specifically nociplastic pain. The average time taken to complete the test was 20 min, and patients were very satisfied with the interview. Results from the present pilot study suggest that patients suffering from chronic pain do not appear to be entirely autonomous in their decision to consent to the proposed treatment plan according to the MacCAT-T questionnaire, and physicians seem to find it difficult to properly assess this competence in a clinical setting. Further studies with larger samples are needed to better evaluate this concept to improve the complex management of these patients.","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142255766","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
From ontological to relational: A scoping review of conceptions of dignity invoked in deliberations on medically assisted death 从本体论到关系论:对医疗协助死亡审议中援引的尊严概念的范围审查
IF 2.7 1区 哲学 Q1 ETHICS Pub Date : 2024-09-12 DOI: 10.1186/s12910-024-01095-z
Isabelle Martineau, Naïma Hamrouni, Johanne Hébert
Dignity is omnipresent in Western ethics, but it also provokes dissension and controversy. One of the most striking examples is the debate on medically assisted death, where dignity is invoked to support antagonistic positions. While some authors conclude that the concept is useless as an ethical reference, many others invite us to deepen our analysis from a multidimensional perspective, to enrich it and make it useful. This scoping study is intended to provide an overview of the different conceptions of dignity used in the assisted dying debate, to better grasp the multiple facets of the concept. The Joanna Briggs Institute's JBI Manual for Evidence Synthesis guided the scoping review. Key words were based on the researchers' expertise and were used to identify relevant literature in French and English. Eleven databases covering the last six decades were consulted. Initially, 2,071 references were found in the databases. After excluding duplicates, screening titles, abstracts, and full texts, and after a specific literature search on the concept of relational dignity, 156 papers were found to match the identified inclusion criteria. The literature highlights the stark confrontation between two dominant conceptions of dignity: ontological and autonomist. However, a lesser-known conceptualization of dignity integrates these two perspectives, underlining the relational and social dimensions of dignity. As a result, dignity emerges as a dynamic, experiential, and dialogical concept, that modulates itself according to circumstances. This raises the possibility of breaking through the binary debate and questioning the current frameworks that define dignity. This multidimensional conceptualization of dignity could lead to a more complete and nuanced understanding of the concept, as well as open richer normative horizons regarding the issue of medically assisted death.
尊严在西方伦理学中无处不在,但也会引发分歧和争议。最显著的例子之一就是关于医学协助死亡的辩论,在这场辩论中,尊严被用来支持对立的立场。一些作者得出结论认为,尊严概念作为伦理参考毫无用处,但也有许多作者请我们从多维角度深化分析,丰富尊严概念并使其发挥作用。本范围研究旨在概述在协助死亡辩论中使用的不同尊严概念,以便更好地把握这一概念的多个方面。乔安娜-布里格斯研究所(Joanna Briggs Institute)的《JBI 证据综合手册》为此次范围界定研究提供了指导。关键词以研究人员的专业知识为基础,用于确定相关的法文和英文文献。研究人员查阅了涵盖过去六十年的 11 个数据库。最初在数据库中找到了 2,071 篇参考文献。在排除重复文献,筛选标题、摘要和全文,并对关系尊严概念进行专门文献检索后,发现有 156 篇论文符合确定的纳入标准。这些文献强调了两种主流尊严概念之间的尖锐对立:本体论和自主论。然而,一种鲜为人知的尊严概念整合了这两种观点,强调了尊严的关系和社会维度。因此,尊严是一个动态的、经验性的和对话性的概念,会根据具体情况进行调整。这就提出了突破二元辩论的可能性,并对定义尊严的现有框架提出了质疑。这种多维度的尊严概念化可使人们对这一概念有更全面、更细致的理解,并为医学协助死亡问题打开更丰富的规范视野。
{"title":"From ontological to relational: A scoping review of conceptions of dignity invoked in deliberations on medically assisted death","authors":"Isabelle Martineau, Naïma Hamrouni, Johanne Hébert","doi":"10.1186/s12910-024-01095-z","DOIUrl":"https://doi.org/10.1186/s12910-024-01095-z","url":null,"abstract":"Dignity is omnipresent in Western ethics, but it also provokes dissension and controversy. One of the most striking examples is the debate on medically assisted death, where dignity is invoked to support antagonistic positions. While some authors conclude that the concept is useless as an ethical reference, many others invite us to deepen our analysis from a multidimensional perspective, to enrich it and make it useful. This scoping study is intended to provide an overview of the different conceptions of dignity used in the assisted dying debate, to better grasp the multiple facets of the concept. The Joanna Briggs Institute's JBI Manual for Evidence Synthesis guided the scoping review. Key words were based on the researchers' expertise and were used to identify relevant literature in French and English. Eleven databases covering the last six decades were consulted. Initially, 2,071 references were found in the databases. After excluding duplicates, screening titles, abstracts, and full texts, and after a specific literature search on the concept of relational dignity, 156 papers were found to match the identified inclusion criteria. The literature highlights the stark confrontation between two dominant conceptions of dignity: ontological and autonomist. However, a lesser-known conceptualization of dignity integrates these two perspectives, underlining the relational and social dimensions of dignity. As a result, dignity emerges as a dynamic, experiential, and dialogical concept, that modulates itself according to circumstances. This raises the possibility of breaking through the binary debate and questioning the current frameworks that define dignity. This multidimensional conceptualization of dignity could lead to a more complete and nuanced understanding of the concept, as well as open richer normative horizons regarding the issue of medically assisted death.","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-09-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142191055","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Putting patients first: when home-based care staff prioritise loyalty to patients above the system and themselves. An ethnographic study 把病人放在第一位:当家庭护理人员把对病人的忠诚放在系统和自身之上时。人种学研究
IF 2.7 1区 哲学 Q1 ETHICS Pub Date : 2024-09-11 DOI: 10.1186/s12910-024-01094-0
Cecilie Knagenhjelm Hertzberg, Morten Magelssen, Anne Kari Tolo Heggestad
The growing number of older people worldwide poses challenges for health policy, particularly in the Global North, where policymakers increasingly expect seniors to live and receive care at home. However, healthcare professionals, particularly in home-based care, face dilemmas between adhering to care ideals and meeting external demands. Although they strive to uphold ethical care standards, they must deal with patients’ needs, cooperation with colleagues and management guidelines. Home-based care is an essential part of healthcare services in Norway, but staff struggle with high patient numbers and time management. This article focuses on how staff deal with ethical challenges related to contextual and organisational constraints. An ethnographic fieldwork in three municipalities in South-East Norway. The first author conducted three to four months of participant observation in each municipality. In addition, she conducted in-depth interviews with key informants in two municipalities and a focus group interview with seven home-based care workers in one municipality. The data was analysed by using a reflexive thematic analysis. Staff in home-based care are frequently more loyal to the patient than to the system and to their own needs. To provide good care, all informants disregarded the patient’s formal decision, i.e. they provided more care than the formalised decision stipulated. To prioritise beneficence to patients, informants also disregarded some of the rules applicable in home-based care. In addition, staff accepted risks to their own safety and health to provide care in the patient’s home. The loyalty of home-based care staff to their patients can go beyond their loyalty to the rules of the system and even their own safety. This commitment might be attributed to a sense of doing meaningful work, to providing relationship-based and individualised care, and to strong moral courage. However, the staff’s emphasis on flexibility and individualised care also brings challenges related to unclear boundaries related to patient care.
全球老年人数量的不断增长给医疗卫生政策带来了挑战,尤其是在全球北方地区,政策制定者越来越期望老年人在家中生活并接受护理。然而,医疗保健专业人员,尤其是居家护理专业人员,面临着坚持护理理想与满足外部需求之间的两难选择。尽管他们努力坚持道德护理标准,但他们必须处理病人的需求、与同事的合作以及管理准则等问题。在挪威,家庭护理是医疗保健服务的重要组成部分,但工作人员却要面对病人数量多和时间管理的难题。本文重点探讨了工作人员如何应对与环境和组织限制相关的道德挑战。在挪威东南部的三个城市进行了人种学实地调查。第一作者在每个城市进行了三至四个月的参与观察。此外,她还对两个市镇的主要信息提供者进行了深入访谈,并对一个市镇的七名家庭护理人员进行了焦点小组访谈。作者采用反思性专题分析法对数据进行了分析。家庭护理人员往往更忠于病人,而不是系统和自身需求。为了提供良好的护理,所有信息提供者都无视病人的正式决定,即他们提供的护理比正式决定规定的更多。为了优先考虑病人的利益,提供信息者还无视一些适用于家庭护理的规则。此外,为了在病人家中提供护理服务,工作人员甘愿承担自身安全和健康的风险。居家护理人员对病人的忠诚可能超越了他们对制度规则甚至自身安全的忠诚。这种忠诚可以归因于一种从事有意义工作的感觉,归因于提供以关系为基础的个性化护理,归因于强大的道德勇气。然而,医护人员对灵活性和个性化护理的强调也带来了与病人护理界限不清有关的挑战。
{"title":"Putting patients first: when home-based care staff prioritise loyalty to patients above the system and themselves. An ethnographic study","authors":"Cecilie Knagenhjelm Hertzberg, Morten Magelssen, Anne Kari Tolo Heggestad","doi":"10.1186/s12910-024-01094-0","DOIUrl":"https://doi.org/10.1186/s12910-024-01094-0","url":null,"abstract":"The growing number of older people worldwide poses challenges for health policy, particularly in the Global North, where policymakers increasingly expect seniors to live and receive care at home. However, healthcare professionals, particularly in home-based care, face dilemmas between adhering to care ideals and meeting external demands. Although they strive to uphold ethical care standards, they must deal with patients’ needs, cooperation with colleagues and management guidelines. Home-based care is an essential part of healthcare services in Norway, but staff struggle with high patient numbers and time management. This article focuses on how staff deal with ethical challenges related to contextual and organisational constraints. An ethnographic fieldwork in three municipalities in South-East Norway. The first author conducted three to four months of participant observation in each municipality. In addition, she conducted in-depth interviews with key informants in two municipalities and a focus group interview with seven home-based care workers in one municipality. The data was analysed by using a reflexive thematic analysis. Staff in home-based care are frequently more loyal to the patient than to the system and to their own needs. To provide good care, all informants disregarded the patient’s formal decision, i.e. they provided more care than the formalised decision stipulated. To prioritise beneficence to patients, informants also disregarded some of the rules applicable in home-based care. In addition, staff accepted risks to their own safety and health to provide care in the patient’s home. The loyalty of home-based care staff to their patients can go beyond their loyalty to the rules of the system and even their own safety. This commitment might be attributed to a sense of doing meaningful work, to providing relationship-based and individualised care, and to strong moral courage. However, the staff’s emphasis on flexibility and individualised care also brings challenges related to unclear boundaries related to patient care.","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-09-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142224819","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
期刊
BMC Medical Ethics
全部 Acc. Chem. Res. ACS Applied Bio Materials ACS Appl. Electron. Mater. ACS Appl. Energy Mater. ACS Appl. Mater. Interfaces ACS Appl. Nano Mater. ACS Appl. Polym. Mater. ACS BIOMATER-SCI ENG ACS Catal. ACS Cent. Sci. ACS Chem. Biol. ACS Chemical Health & Safety ACS Chem. Neurosci. ACS Comb. Sci. ACS Earth Space Chem. ACS Energy Lett. ACS Infect. Dis. ACS Macro Lett. ACS Mater. Lett. ACS Med. Chem. Lett. ACS Nano ACS Omega ACS Photonics ACS Sens. ACS Sustainable Chem. Eng. ACS Synth. Biol. Anal. Chem. BIOCHEMISTRY-US Bioconjugate Chem. BIOMACROMOLECULES Chem. Res. Toxicol. Chem. Rev. Chem. Mater. CRYST GROWTH DES ENERG FUEL Environ. Sci. Technol. Environ. Sci. Technol. Lett. Eur. J. Inorg. Chem. IND ENG CHEM RES Inorg. Chem. J. Agric. Food. Chem. J. Chem. Eng. Data J. Chem. Educ. J. Chem. Inf. Model. J. Chem. Theory Comput. J. Med. Chem. J. Nat. Prod. J PROTEOME RES J. Am. Chem. Soc. LANGMUIR MACROMOLECULES Mol. Pharmaceutics Nano Lett. Org. Lett. ORG PROCESS RES DEV ORGANOMETALLICS J. Org. Chem. J. Phys. Chem. J. Phys. Chem. A J. Phys. Chem. B J. Phys. Chem. C J. Phys. Chem. Lett. Analyst Anal. Methods Biomater. Sci. Catal. Sci. Technol. Chem. Commun. Chem. Soc. Rev. CHEM EDUC RES PRACT CRYSTENGCOMM Dalton Trans. Energy Environ. Sci. ENVIRON SCI-NANO ENVIRON SCI-PROC IMP ENVIRON SCI-WAT RES Faraday Discuss. Food Funct. Green Chem. Inorg. Chem. Front. Integr. Biol. J. Anal. At. Spectrom. J. Mater. Chem. A J. Mater. Chem. B J. Mater. Chem. C Lab Chip Mater. Chem. Front. Mater. Horiz. MEDCHEMCOMM Metallomics Mol. Biosyst. Mol. Syst. Des. Eng. Nanoscale Nanoscale Horiz. Nat. Prod. Rep. New J. Chem. Org. Biomol. Chem. Org. Chem. Front. PHOTOCH PHOTOBIO SCI PCCP Polym. Chem.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
0
微信
客服QQ
Book学术公众号 扫码关注我们
反馈
×
意见反馈
请填写您的意见或建议
请填写您的手机或邮箱
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
现在去查看 取消
×
提示
确定
Book学术官方微信
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术
文献互助 智能选刊 最新文献 互助须知 联系我们:info@booksci.cn
Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。
Copyright © 2023 Book学术 All rights reserved.
ghs 京公网安备 11010802042870号 京ICP备2023020795号-1