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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。
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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。
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引用次数: 0
Impact of the life-sustaining treatment decision act on organ donation in out-of-hospital cardiac arrests in South Korea: a multi-centre retrospective study. 生命维持治疗决定法案对韩国院外心脏骤停患者器官捐献的影响:一项多中心回顾性研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-09-02 DOI: 10.1186/s12910-024-01090-4
Min Jae Kim, Dong Eun Lee, Jong Kun Kim, In Hwan Yeo, Haewon Jung, Jung Ho Kim, Tae Chang Jang, Sang-Hun Lee, Jinwook Park, Deokhyeon Kim, Hyun Wook Ryoo

Background: The demand for organ transplants, both globally and in South Korea, substantially exceeds the supply, a situation that might have been aggravated by the enactment of the Life-Sustaining Treatment Decision Act (LSTDA) in February 2018. This legislation may influence emergency medical procedures and the availability of organs from brain-dead donors. This study aimed to assess LSTDA's impact, introduced in February 2018, on organ donation status in out-of-hospital cardiac arrest (OHCA) patients in a metropolitan city and identified related factors.

Methods: We conducted a retrospective analysis of a regional cardiac arrest registry. This study included patients aged 16 or older with cardiac arrest and a cerebral performance category (CPC) score of 5 from January 2015 to December 2022. The exclusion criteria were CPC scores of 1-4, patients under 16 years, and patients declared dead or transferred from emergency departments. Logistic regression analysis was used to analyse factors affecting organ donation.

Results: Of the 751 patients included in this study, 47 were organ donors, with a median age of 47 years. Before the LSTDA, there were 30 organ donations, which declined to 17 after its implementation. In the organ donation group, the causes of cardiac arrest included medical (34%), hanging (46.8%), and trauma (19.2%). The adjusted odds ratio for organ donation before the LSTDA implementation was 6.12 (95% CI 3.09-12.12), with non-medical aetiology as associated factors.

Conclusion: The enactment of the LSTDA in 2018 in South Korea may be linked to reduced organ donations among patients with OHCA, underscoring the need to re-evaluate the medical and legal aspects of organ donation, especially considering end-of-life care decisions.

背景:全球和韩国对器官移植的需求都大大超过了供应量,2018 年 2 月颁布的《维持生命治疗决定法》(LSTDA)可能会加剧这种情况。这项立法可能会影响紧急医疗程序和脑死亡捐献者器官的供应。本研究旨在评估2018年2月出台的《生命维持治疗决定法》对某大都市院外心脏骤停(OHCA)患者器官捐献状况的影响,并确定相关因素:我们对一个地区性心脏骤停登记处进行了回顾性分析。本研究纳入了 2015 年 1 月至 2022 年 12 月期间年龄在 16 岁或以上、心脏骤停且脑功能分类(CPC)评分为 5 分的患者。排除标准包括 CPC 评分为 1-4 分的患者、16 岁以下的患者以及宣布死亡或从急诊科转出的患者。采用逻辑回归分析法对影响器官捐献的因素进行了分析:本研究共纳入 751 名患者,其中 47 人是器官捐献者,年龄中位数为 47 岁。LSTDA实施前,有30例器官捐献,实施后减少到17例。在器官捐献组中,心脏骤停的原因包括内科(34%)、悬吊(46.8%)和外伤(19.2%)。在《肺结核和呼吸系统疾病登记法案》实施前,器官捐献的调整后几率比为6.12(95% CI 3.09-12.12),非医疗病因是相关因素:韩国于2018年颁布了LSTDA,这可能与OHCA患者的器官捐献减少有关,强调了重新评估器官捐献的医疗和法律方面的必要性,尤其是考虑到临终关怀的决定。
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引用次数: 0
Encompassing trust in medical AI from the perspective of medical students: a quantitative comparative study. 从医学生的角度看医学人工智能中的信任:一项定量比较研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-09-02 DOI: 10.1186/s12910-024-01092-2
Anamaria Malešević, Mária Kolesárová, Anto Čartolovni

Background: In the years to come, artificial intelligence will become an indispensable tool in medical practice. The digital transformation will undoubtedly affect today's medical students. This study focuses on trust from the perspective of three groups of medical students - students from Croatia, students from Slovakia, and international students studying in Slovakia.

Methods: A paper-pen survey was conducted using a non-probabilistic convenience sample. In the second half of 2022, 1715 students were surveyed at five faculties in Croatia and three in Slovakia.

Results: Specifically, 38.2% of students indicated familiarity with the concept of AI, while 44.8% believed they would use AI in the future. Patient readiness for the implementation of technologies was mostly assessed as being low. More than half of the students, 59.1%, believe that the implementation of digital technology (AI) will negatively impact the patient-physician relationship and 51,3% of students believe that patients will trust physicians less. The least agreement with the statement was observed among international students, while a higher agreement was expressed by Slovak and Croatian students 40.9% of Croatian students believe that users do not trust the healthcare system, 56.9% of Slovak students agree with this view, while only 17.3% of international students share this opinion. The ability to explain to patients how AI works if they were asked was statistically significantly different for the different student groups, international students expressed the lowest agreement, while the Slovak and Croatian students showed a higher agreement.

Conclusion: This study provides insight into medical students' attitudes from Croatia, Slovakia, and international students regarding the role of artificial intelligence (AI) in the future healthcare system, with a particular emphasis on the concept of trust. A notable difference was observed between the three groups of students, with international students differing from their Croatian and Slovak colleagues. This study also highlights the importance of integrating AI topics into the medical curriculum, taking into account national social & cultural specificities that could negatively impact AI implementation if not carefully addressed.

背景介绍未来几年,人工智能将成为医疗实践中不可或缺的工具。数字化转型无疑将影响当今的医学生。本研究主要从克罗地亚学生、斯洛伐克学生和在斯洛伐克学习的留学生这三类医学生的角度来探讨信任问题:方法:采用非概率方便抽样进行纸笔调查。2022 年下半年,对克罗地亚 5 个学院和斯洛伐克 3 个学院的 1715 名学生进行了调查:具体而言,38.2%的学生表示熟悉人工智能的概念,44.8%的学生认为他们将来会使用人工智能。大部分学生认为患者对使用技术的准备程度较低。超过半数(59.1%)的学生认为,数字技术(人工智能)的应用将对医患关系产生负面影响,51.3%的学生认为患者对医生的信任度会降低。国际学生对这一说法的认同度最低,而斯洛伐克和克罗地亚学生的认同度较高,40.9%的克罗地亚学生认为用户不信任医疗系统,56.9%的斯洛伐克学生同意这一观点,而只有 17.3%的国际学生赞同这一观点。不同学生群体在被问及是否有能力向患者解释人工智能是如何工作的问题上存在显著统计学差异,留学生的认同度最低,而斯洛伐克和克罗地亚学生的认同度较高:本研究深入探讨了克罗地亚、斯洛伐克和国际学生对人工智能(AI)在未来医疗系统中的作用的态度,并特别强调了信任的概念。三组学生之间存在明显差异,留学生与克罗地亚和斯洛伐克留学生的态度不同。本研究还强调了将人工智能主题纳入医学课程的重要性,同时考虑到国家社会和文化的特殊性,如果不认真对待这些特殊性,可能会对人工智能的实施产生负面影响。
{"title":"Encompassing trust in medical AI from the perspective of medical students: a quantitative comparative study.","authors":"Anamaria Malešević, Mária Kolesárová, Anto Čartolovni","doi":"10.1186/s12910-024-01092-2","DOIUrl":"10.1186/s12910-024-01092-2","url":null,"abstract":"<p><strong>Background: </strong>In the years to come, artificial intelligence will become an indispensable tool in medical practice. The digital transformation will undoubtedly affect today's medical students. This study focuses on trust from the perspective of three groups of medical students - students from Croatia, students from Slovakia, and international students studying in Slovakia.</p><p><strong>Methods: </strong>A paper-pen survey was conducted using a non-probabilistic convenience sample. In the second half of 2022, 1715 students were surveyed at five faculties in Croatia and three in Slovakia.</p><p><strong>Results: </strong>Specifically, 38.2% of students indicated familiarity with the concept of AI, while 44.8% believed they would use AI in the future. Patient readiness for the implementation of technologies was mostly assessed as being low. More than half of the students, 59.1%, believe that the implementation of digital technology (AI) will negatively impact the patient-physician relationship and 51,3% of students believe that patients will trust physicians less. The least agreement with the statement was observed among international students, while a higher agreement was expressed by Slovak and Croatian students 40.9% of Croatian students believe that users do not trust the healthcare system, 56.9% of Slovak students agree with this view, while only 17.3% of international students share this opinion. The ability to explain to patients how AI works if they were asked was statistically significantly different for the different student groups, international students expressed the lowest agreement, while the Slovak and Croatian students showed a higher agreement.</p><p><strong>Conclusion: </strong>This study provides insight into medical students' attitudes from Croatia, Slovakia, and international students regarding the role of artificial intelligence (AI) in the future healthcare system, with a particular emphasis on the concept of trust. A notable difference was observed between the three groups of students, with international students differing from their Croatian and Slovak colleagues. This study also highlights the importance of integrating AI topics into the medical curriculum, taking into account national social & cultural specificities that could negatively impact AI implementation if not carefully addressed.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"94"},"PeriodicalIF":3.0,"publicationDate":"2024-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11367737/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142121234","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
Opportunities and challenges of a dynamic consent-based application: personalized options for personal health data sharing and utilization. 基于同意的动态应用程序的机遇与挑战:个人健康数据共享和利用的个性化选择。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-08-31 DOI: 10.1186/s12910-024-01091-3
Ah Ra Lee, Dongjun Koo, Il Kon Kim, Eunjoo Lee, Sooyoung Yoo, Ho-Young Lee

Background: The principles of dynamic consent are based on the idea of safeguarding the autonomy of individuals by providing them with personalized options to choose from regarding the sharing and utilization of personal health data. To facilitate the widespread introduction of dynamic consent concepts in practice, individuals must perceive these procedures as useful and easy to use. This study examines the user experience of a dynamic consent-based application, in particular focusing on personalized options, and explores whether this approach may be useful in terms of ensuring the autonomy of data subjects in personal health data usage.

Methods: This study investigated the user experience of MyHealthHub, a dynamic consent-based application, among adults aged 18 years or older living in South Korea. Eight tasks exploring the primary aspects of dynamic consent principles-including providing consent, monitoring consent history, and managing personalized options were provided to participants. Feedback on the experiences of testing MyHealthHub was gathered via multiple-choice and open-ended questionnaire items.

Results: A total of 30 participants provided dynamic consent through the MyHealthHub application. Most participants successfully completed all the provided tasks without assistance and regarded the personalized options favourably. Concerns about the security and reliability of the digital-based consent system were raised, in contrast to positive responses elicited in other aspects, such as perceived usefulness and ease of use.

Conclusions: Dynamic consent is an ethically advantageous approach for the sharing and utilization of personal health data. Personalized options have the potential to serve as pragmatic safeguards for the autonomy of individuals in the sharing and utilization of personal health data. Incorporating the principles of dynamic consent into real-world scenarios requires remaining issues, such as the need for powerful authentication mechanisms that bolster privacy and security, to be addressed. This would enhance the trustworthiness of dynamic consent-based applications while preserving their ethical advantages.

背景:动态同意的原则是基于保障个人自主权的理念,在共享和使用个人健康数据方面为个人提供个性化的选择。为促进动态同意概念在实践中的广泛引入,个人必须认为这些程序有用且易于使用。本研究考察了基于动态同意的应用程序的用户体验,尤其关注个性化选项,并探讨这种方法是否有助于确保数据主体在使用个人健康数据时的自主权:本研究调查了 MyHealthHub(一款基于动态同意的应用程序)的用户体验,调查对象是韩国 18 岁或以上的成年人。向参与者提供了八项任务,探索动态同意原则的主要方面,包括提供同意、监控同意历史和管理个性化选项。通过多项选择和开放式问卷调查项目收集了对 MyHealthHub 测试体验的反馈意见:共有 30 名参与者通过 MyHealthHub 应用程序提供了动态同意。大多数参与者在没有帮助的情况下成功完成了所有任务,并对个性化选项给予了好评。参与者对基于数字技术的同意系统的安全性和可靠性表示担忧,而在其他方面,如实用性和易用性方面,参与者则给予了积极的评价:动态同意是共享和使用个人健康数据的一种道德上有利的方法。在共享和使用个人健康数据时,个性化选项有可能成为个人自主权的务实保障。要将动态同意原则纳入现实世界的应用场景,还需要解决其他一些问题,例如需要建立强大的身份验证机制,以加强隐私和安全。这将提高基于动态同意的应用的可信度,同时保留其道德优势。
{"title":"Opportunities and challenges of a dynamic consent-based application: personalized options for personal health data sharing and utilization.","authors":"Ah Ra Lee, Dongjun Koo, Il Kon Kim, Eunjoo Lee, Sooyoung Yoo, Ho-Young Lee","doi":"10.1186/s12910-024-01091-3","DOIUrl":"10.1186/s12910-024-01091-3","url":null,"abstract":"<p><strong>Background: </strong>The principles of dynamic consent are based on the idea of safeguarding the autonomy of individuals by providing them with personalized options to choose from regarding the sharing and utilization of personal health data. To facilitate the widespread introduction of dynamic consent concepts in practice, individuals must perceive these procedures as useful and easy to use. This study examines the user experience of a dynamic consent-based application, in particular focusing on personalized options, and explores whether this approach may be useful in terms of ensuring the autonomy of data subjects in personal health data usage.</p><p><strong>Methods: </strong>This study investigated the user experience of MyHealthHub, a dynamic consent-based application, among adults aged 18 years or older living in South Korea. Eight tasks exploring the primary aspects of dynamic consent principles-including providing consent, monitoring consent history, and managing personalized options were provided to participants. Feedback on the experiences of testing MyHealthHub was gathered via multiple-choice and open-ended questionnaire items.</p><p><strong>Results: </strong>A total of 30 participants provided dynamic consent through the MyHealthHub application. Most participants successfully completed all the provided tasks without assistance and regarded the personalized options favourably. Concerns about the security and reliability of the digital-based consent system were raised, in contrast to positive responses elicited in other aspects, such as perceived usefulness and ease of use.</p><p><strong>Conclusions: </strong>Dynamic consent is an ethically advantageous approach for the sharing and utilization of personal health data. Personalized options have the potential to serve as pragmatic safeguards for the autonomy of individuals in the sharing and utilization of personal health data. Incorporating the principles of dynamic consent into real-world scenarios requires remaining issues, such as the need for powerful authentication mechanisms that bolster privacy and security, to be addressed. This would enhance the trustworthiness of dynamic consent-based applications while preserving their ethical advantages.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"92"},"PeriodicalIF":3.0,"publicationDate":"2024-08-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11365279/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142115003","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
Compromised informed consent due to functional health literacy challenges in Chinese hospitals. 中国医院因功能性健康知识普及困难而导致知情同意受损。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-08-23 DOI: 10.1186/s12910-024-01089-x
Dangui Zhang, Zhilin Hu, Zhuojia Wu, Ting Huang, Tingting Huang, Junhao Liu, Hongkun Sun, William Ba-Thein

Background: Medical informed consent stands as an ethical and legal requisite preceding any medical intervention. Hospitalized patients face functional health literacy (FHL) challenges when dealing with informed consent forms (ICFs). The legitimacy of ICFs and informed consent procedures in China remains substantially undisclosed. The study's aim was to investigate if Chinese patients have adequate FHL to be truly informed before providing medical consent.

Methods: In this cross-sectional, structured interview-based study, FHL was assessed within the context of the informed consent scenarios in two teaching hospitals (a 1500-bed general tertiary hospital and a 700-bed cancer hospital) affiliated with Shantou University Medical College. Twenty-seven patients admitted across clinical departments, along with their relatives (n = 59), were enrolled in the study after obtaining informed consent. The participants underwent a three-step assessment with two selected ICFs -teach-back skills, perceived understanding (perception), and informed knowledge (cognizance), with each component carrying a maximum score of 10. Data were analyzed with SPSS (version 22.0) for descriptive and inferential statistics, with consideration of significant P values as < 0.05.

Results: The median age (IQR and range) of participants was 35.5 (28 - 49 and 13 - 74) years. Most participants had only high school education (24.4%, 21/86) or below high school education (47.7%, 41/86). The median score (IQR) of FHL assessments-teach-back, perception, and cognizance-was 4.0 (2.5, 5.8), 8.0 (6.8, 8.8), and 6.5 (5.5, 8.0) out of 10, respectively. A moderate correlation was observed between the scores of cognizance and teach-back (r = 0.359, P = 0.002) or perception (r = 0.437, P < 0.001). Multivariate linear regression analysis predicted being a patient and having lower education levels as independent risk factors of inadequate FHL (Ps = 0.001). Lack of patient-centeredness in ICFs, time constraints, and poor clinical communication were identified as barriers impeding informed consent.

Conclusions: This study demonstrates inadequacy in personal FHL and impaired organizational HL, resulting in compromised informed consent in Chinese teaching hospitals. As a remedy, we propose improving the quality of ICFs and institutionally mandated outcome-focused training on informed consent for all concerned clinicians to enhance medical ethics, ensure quality health care, address patient values, and mitigate potential medical conflicts.

背景:医疗知情同意是任何医疗干预之前的道德和法律要求。住院病人在处理知情同意书(ICF)时面临着功能性健康知识(FHL)方面的挑战。在中国,ICF 和知情同意程序的合法性仍未得到充分披露。本研究旨在调查中国患者是否具备足够的功能性健康素养,以便在提供医疗同意书前获得真正的知情权:在这项以结构化访谈为基础的横断面研究中,在汕头大学医学院附属两所教学医院(拥有 1500 张床位的综合性三级甲等医院和拥有 700 张床位的肿瘤医院)的知情同意情景中对 FHL 进行了评估。在获得知情同意后,27名临床科室住院患者及其亲属(59人)被纳入研究。研究人员通过回授技能、感知理解(感知)和知情知识(认知)这两个选定的 ICF 进行了三步评估,每个部分的最高分均为 10 分。数据采用 SPSS(22.0 版)进行描述性和推论性统计分析,并考虑显著的 P 值作为结果:参与者的中位年龄(IQR 和范围)为 35.5(28 - 49 和 13 - 74)岁。大多数参与者只有高中学历(24.4%,21/86)或高中以下学历(47.7%,41/86)。FHL评估的中位数(IQR)--回授、感知和认知--分别为4.0(2.5,5.8)、8.0(6.8,8.8)和6.5(5.5,8.0)分(满分10分)。认知得分与回授(r = 0.359,P = 0.002)或感知(r = 0.437,P 结论:认知得分与回授(r = 0.359,P = 0.002)或感知(r = 0.437,P = 0.002)之间存在中度相关性:本研究表明,在中国的教学医院中,个人 FHL 的不足和组织 HL 的受损导致知情同意受到影响。作为补救措施,我们建议提高ICF的质量,并对所有相关临床医生进行以结果为中心的知情同意培训,以提高医德水平,确保医疗质量,满足患者价值,并减少潜在的医疗冲突。
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引用次数: 0
Issues and implications of the life-sustaining treatment decision act: comparing the data from the survey and clinical data of inpatients at the end-of-life process. 维持生命治疗决定法案的问题和影响:比较临终过程中住院病人的调查数据和临床数据。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-08-19 DOI: 10.1186/s12910-024-01088-y
Eunjeong Song, Dongsoon Shin, Jooseon Lee, Seonyoung Yun, Minjeong Eom, Suhee Oh, Heejung Lee, Jiwan Lee, Rhayun Song

Background: Health professionals had difficulty choosing the right time to discuss life-sustaining treatments (LSTs) since the Korean Act was passed in 2018.

Objective: This study aimed to understand how patients decide to undergo LSTs in clinical practice and to compare the perceptions of these decisions among health professionals, patients, and families with suggestions to support the self-directed decisions of patients.

Research design: A retrospective observational study with electronic medical records (EMRs) and a descriptive survey was used.

Methods: The data obtained from the EMRs included all adult patients who died in end-of-life care at a university hospital in 2021. We also conducted a survey of 214 health professionals and 100 patients and their families (CNUH IRB approval no. 2022-07-006).

Results: Based on the EMR data of 916 patients in end-of-life care, 78.4% signed do-not-attempt-resuscitation consents, 5.6% completed the documents for LSTs, and 10.2% completed both forms. LST decisions were mostly made by family members (81.5%). Most survey participants agreed that meaningless LSTs should be suspended, and the decision should be made by patients. Patients and family members (42-56%) and health professionals (56-58%) recommended discussing LST suspension when the patient is still conscious but with predicted deterioration of their condition. The suffering experienced by the patient was considered to be a priority by most patients (58%) and families (54%) during the decision-making process, while health professionals considered "the possibility of the patient's recovery" to be the highest priority (43-55%).

Conclusions: There is still a significant discrepancy in the perceptions of LST decisions among health professionals, patients, and their families despite high awareness of the Act. This situation makes it challenging to implement the Act to ensure respect for the rights of patients to self-determination and dignified end-of-life. Further effort is needed to improve the awareness of LSTs and to clarify the ambiguity of document preparation timing.

背景:自2018年《韩国法案》通过以来,医护人员很难选择合适的时机讨论维持生命治疗(LST):本研究旨在了解患者在临床实践中如何决定接受 LST,并比较医护人员、患者和家属对这些决定的看法,提出支持患者自主决定的建议:研究设计:采用电子病历(EMR)和描述性调查进行回顾性观察研究:从电子病历中获得的数据包括 2021 年一家大学医院所有死于临终关怀的成年患者。我们还对214名医疗专业人员和100名患者及其家属进行了调查(中国人民大学附属医院IRB批准号:2022-07-006):根据916名临终关怀患者的EMR数据,78.4%的患者签署了 "不尝试复苏 "同意书,5.6%的患者填写了LST文件,10.2%的患者填写了两种表格。LST 决定大多由家庭成员做出(81.5%)。大多数参与调查者都认为应暂停无意义的 LST,并由患者做出决定。病人和家属(42%-56%)以及医疗专业人员(56%-58%)建议在病人仍有意识但病情预计会恶化时讨论暂停 LST 的问题。在决策过程中,大多数患者(58%)和家属(54%)认为患者遭受的痛苦是优先考虑的问题,而医疗专业人员则认为 "患者康复的可能性 "是最优先考虑的问题(43-55%):结论:尽管对该法案的认知度很高,但医疗专业人员、患者及其家属对 LST 决策的看法仍存在很大差异。这种情况使得实施该法案以确保尊重患者的自决权和有尊严地结束生命的权利面临挑战。需要进一步努力提高人们对生命末期治疗的认识,并澄清文件准备时间的模糊性。
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引用次数: 0
Qualitative studies involving users of clinical neurotechnology: a scoping review. 涉及临床神经技术用户的定性研究:范围综述。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-08-14 DOI: 10.1186/s12910-024-01087-z
Georg Starke, Tugba Basaran Akmazoglu, Annalisa Colucci, Mareike Vermehren, Amanda van Beinum, Maria Buthut, Surjo R Soekadar, Christoph Bublitz, Jennifer A Chandler, Marcello Ienca

Background: The rise of a new generation of intelligent neuroprostheses, brain-computer interfaces (BCI) and adaptive closed-loop brain stimulation devices hastens the clinical deployment of neurotechnologies to treat neurological and neuropsychiatric disorders. However, it remains unclear how these nascent technologies may impact the subjective experience of their users. To inform this debate, it is crucial to have a solid understanding how more established current technologies already affect their users. In recent years, researchers have used qualitative research methods to explore the subjective experience of individuals who become users of clinical neurotechnology. Yet, a synthesis of these more recent findings focusing on qualitative methods is still lacking.

Methods: To address this gap in the literature, we systematically searched five databases for original research articles that investigated subjective experiences of persons using or receiving neuroprosthetics, BCIs or neuromodulation with qualitative interviews and raised normative questions.

Results: 36 research articles were included and analysed using qualitative content analysis. Our findings synthesise the current scientific literature and reveal a pronounced focus on usability and other technical aspects of user experience. In parallel, they highlight a relative neglect of considerations regarding agency, self-perception, personal identity and subjective experience.

Conclusions: Our synthesis of the existing qualitative literature on clinical neurotechnology highlights the need to expand the current methodological focus as to investigate also non-technical aspects of user experience. Given the critical role considerations of agency, self-perception and personal identity play in assessing the ethical and legal significance of these technologies, our findings reveal a critical gap in the existing literature. This review provides a comprehensive synthesis of the current qualitative research landscape on neurotechnology and the limitations thereof. These findings can inform researchers on how to study the subjective experience of neurotechnology users more holistically and build patient-centred neurotechnology.

背景:新一代智能神经义肢、脑机接口(BCI)和自适应闭环脑刺激设备的兴起,加速了治疗神经和神经精神疾病的神经技术的临床应用。然而,目前仍不清楚这些新兴技术会如何影响其用户的主观体验。要为这一讨论提供信息,关键是要扎实了解当前较为成熟的技术是如何影响其用户的。近年来,研究人员使用定性研究方法来探索临床神经技术用户的主观体验。然而,目前仍缺乏对这些侧重于定性方法的最新研究成果的综述:为了填补这一文献空白,我们在五个数据库中系统检索了原创研究文章,这些文章通过定性访谈调查了使用或接受神经义肢、BCIs 或神经调控的人员的主观体验,并提出了规范性问题:结果:共收录了 36 篇研究文章,并采用定性内容分析法进行了分析。我们的研究结果综合了当前的科学文献,显示出研究重点明显集中在可用性和用户体验的其他技术方面。与此同时,这些研究还突出强调了对代理、自我感知、个人身份和主观体验的相对忽视:我们对有关临床神经技术的现有定性文献进行了综述,强调有必要扩大目前的方法论重点,以便同时研究用户体验的非技术方面。考虑到代理、自我认知和个人身份在评估这些技术的伦理和法律意义方面的关键作用,我们的研究结果揭示了现有文献中的一个重要空白。本综述全面综述了当前有关神经技术的定性研究情况及其局限性。这些发现可以为研究人员提供信息,帮助他们更全面地研究神经技术用户的主观体验,并建立以患者为中心的神经技术。
{"title":"Qualitative studies involving users of clinical neurotechnology: a scoping review.","authors":"Georg Starke, Tugba Basaran Akmazoglu, Annalisa Colucci, Mareike Vermehren, Amanda van Beinum, Maria Buthut, Surjo R Soekadar, Christoph Bublitz, Jennifer A Chandler, Marcello Ienca","doi":"10.1186/s12910-024-01087-z","DOIUrl":"10.1186/s12910-024-01087-z","url":null,"abstract":"<p><strong>Background: </strong>The rise of a new generation of intelligent neuroprostheses, brain-computer interfaces (BCI) and adaptive closed-loop brain stimulation devices hastens the clinical deployment of neurotechnologies to treat neurological and neuropsychiatric disorders. However, it remains unclear how these nascent technologies may impact the subjective experience of their users. To inform this debate, it is crucial to have a solid understanding how more established current technologies already affect their users. In recent years, researchers have used qualitative research methods to explore the subjective experience of individuals who become users of clinical neurotechnology. Yet, a synthesis of these more recent findings focusing on qualitative methods is still lacking.</p><p><strong>Methods: </strong>To address this gap in the literature, we systematically searched five databases for original research articles that investigated subjective experiences of persons using or receiving neuroprosthetics, BCIs or neuromodulation with qualitative interviews and raised normative questions.</p><p><strong>Results: </strong>36 research articles were included and analysed using qualitative content analysis. Our findings synthesise the current scientific literature and reveal a pronounced focus on usability and other technical aspects of user experience. In parallel, they highlight a relative neglect of considerations regarding agency, self-perception, personal identity and subjective experience.</p><p><strong>Conclusions: </strong>Our synthesis of the existing qualitative literature on clinical neurotechnology highlights the need to expand the current methodological focus as to investigate also non-technical aspects of user experience. Given the critical role considerations of agency, self-perception and personal identity play in assessing the ethical and legal significance of these technologies, our findings reveal a critical gap in the existing literature. This review provides a comprehensive synthesis of the current qualitative research landscape on neurotechnology and the limitations thereof. These findings can inform researchers on how to study the subjective experience of neurotechnology users more holistically and build patient-centred neurotechnology.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"89"},"PeriodicalIF":3.0,"publicationDate":"2024-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11323440/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141977335","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 dimension of personal health monitoring in the armed forces: a scoping review. 武装部队中个人健康监测的伦理层面:范围界定审查。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-08-10 DOI: 10.1186/s12910-024-01086-0
Dave Bovens, Eva van Baarle, Kirsten Ziesemer, Bert Molewijk

Background: Personal Health Monitoring (PHM) has the potential to enhance soldier health outcomes. To promote morally responsible development, implementation, and use of PHM in the armed forces, it is important to be aware of the inherent ethical dimension of PHM. In order to improve the understanding of the ethical dimension, a scoping review of the existing academic literature on the ethical dimension of PHM was conducted.

Methods: Four bibliographical databases (Ovid/Medline, Embase.com, Clarivate Analytics/Web of Science Core Collection, and Elsevier/SCOPUS) were searched for relevant literature from their inception to June 1, 2023. Studies were included if they sufficiently addressed the ethical dimension of PHM and were related to or claimed relevance for the military. After selection and extraction, the data was analysed using a qualitative thematic approach.

Results: A total of 9,071 references were screened. After eligibility screening, 19 articles were included for this review. The review identifies and describes three categories reflecting the ethical dimension of PHM in the military: (1) utilitarian considerations, (2) value-based considerations, and (3) regulatory responsibilities. The four main values that have been identified as being of concern are those of privacy, security, trust, and autonomy.

Conclusions: This review demonstrates that PHM in the armed forces is primarily approached from a utilitarian perspective, with a focus on its benefits, without explicit critical deliberation on PHM's potential moral downsides. Also, the review highlights a significant research gap with a specific lack of empirical studies focussing specifically on the ethical dimension of PHM. Awareness of the inherent ethical dimension of PHM in the military, including value conflicts and how to balance them, can help to contribute to a morally responsible development, implementation, and use of PHM in the armed forces.

背景:个人健康监测(PHM)具有提高士兵健康水平的潜力。为了促进武装部队在道义上负责任地开发、实施和使用 PHM,必须认识到 PHM 固有的伦理层面。为了加深对道德层面的理解,我们对现有的有关 PHM 道德层面的学术文献进行了范围审查:对四个文献数据库(Ovid/Medline、Embase.com、Clarivate Analytics/Web of Science Core Collection 和 Elsevier/SCOPUS)进行了检索,以查找从开始到 2023 年 6 月 1 日的相关文献。如果研究充分论述了公共健康管理的伦理维度,并且与军队相关或声称与军队相关,则将其纳入研究范围。经过筛选和提取后,采用定性主题方法对数据进行了分析:共筛选出 9,071 篇参考文献。经过资格筛选,本综述共纳入 19 篇文章。综述确定并描述了反映军队 PHM 伦理层面的三个类别:(1) 功利考虑,(2) 基于价值的考虑,(3) 监管责任。已确定的四个主要关注价值是隐私、安全、信任和自主:本综述表明,在武装部队中使用 PHM 主要是从功利主义的角度出发,重点关注 PHM 的益处,而没有对 PHM 潜在的道德弊端进行明确的批判性思考。此外,本综述还强调了一个重大的研究空白,即缺乏专门针对 PHM 道德层面的实证研究。认识到军队中 PHM 固有的道德维度,包括价值冲突以及如何平衡这些冲突,有助于促进军队中 PHM 在道德上负责任的发展、实施和使用。
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引用次数: 0
Exploration of clinical ethics consultation in Uganda: a case study of Uganda Cancer Institute. 乌干达临床伦理咨询探索:乌干达癌症研究所案例研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-08-09 DOI: 10.1186/s12910-024-01085-1
Mayi Mayega Nanyonga, Paul Kutyabami, Olivia Kituuka, Nelson K Sewankambo

Introduction: Globally, healthcare providers (HCPs), hospital administrators, patients and their caretakers are increasingly confronted with complex moral, social, cultural, ethical, and legal dilemmas during clinical care. In high-income countries (HICs), formal and informal clinical ethics support services (CESSs) have been used to resolve bioethical conflicts among HCPs, patients, and their families. There is limited evidence about mechanisms used to resolve these issues as well as experiences and perspectives of the stakeholders that utilize them in most African countries including Uganda.

Methods: This phenomenological qualitative study utilized in-depth interviews (IDIs) and focus group discussions (FGDs) to collect data from Uganda Cancer Institute (UCI) staff, patients, and caretakers who were purposively selected. Data was analyzed deductively and inductively yielding themes and sub-themes that were used to develop a codebook.

Results: The study revealed there was no formal committee or mechanism dedicated to resolving ethical dilemmas at the UCI. Instead, ethical dilemmas were addressed in six forums: individual consultations, tumor board meetings, morbidity and mortality meetings (MMMs), core management meetings, rewards and sanctions committee meetings, and clinical departmental meetings. Participants expressed apprehension regarding the efficacy of these fora due to their non-ethics related agendas as well as members lacking training in medical ethics and the necessary experience to effectively resolve ethical dilemmas.

Conclusion: The fora employed at the UCI to address ethical dilemmas were implicit, involving decisions made through various structures without the guidance of personnel well-versed in medical or clinical ethics. There was a strong recommendation from participants to establish a multidisciplinary clinical ethics committee comprising members who are trained, skilled, and experienced in medical and clinical ethics.

导言:在全球范围内,医疗服务提供者(HCPs)、医院管理者、患者及其护理人员在临床护理过程中越来越多地面临复杂的道德、社会、文化、伦理和法律困境。在高收入国家(HICs),正规和非正规的临床伦理支持服务(CESSs)被用来解决 HCPs、患者及其家属之间的生物伦理冲突。在包括乌干达在内的大多数非洲国家,有关解决这些问题的机制以及利用这些机制的利益相关者的经验和观点的证据十分有限:这项现象学定性研究采用深入访谈(IDI)和焦点小组讨论(FGD)的方法,从乌干达癌症研究所(UCI)的工作人员、患者和护理人员中收集数据。对数据进行了演绎和归纳分析,得出的主题和次主题被用于编制编码手册:研究显示,加州大学洛杉矶分校没有专门解决伦理困境的正式委员会或机制。取而代之的是在六个论坛上解决伦理困境:个人咨询、肿瘤委员会会议、发病率和死亡率会议(MMMs)、核心管理会议、奖惩委员会会议和临床科室会议。由于这些论坛的议程与伦理无关,而且论坛成员缺乏医学伦理培训和有效解决伦理困境的必要经验,与会者对这些论坛的效果表示担忧:美国加州大学洛杉矶分校用于解决伦理困境的论坛是隐性的,涉及在没有精通医学或临床伦理学的人员指导下通过各种结构做出的决定。与会者强烈建议成立一个多学科临床伦理委员会,其成员应接受过医学和临床伦理方面的培训,具备相关技能和经验。
{"title":"Exploration of clinical ethics consultation in Uganda: a case study of Uganda Cancer Institute.","authors":"Mayi Mayega Nanyonga, Paul Kutyabami, Olivia Kituuka, Nelson K Sewankambo","doi":"10.1186/s12910-024-01085-1","DOIUrl":"10.1186/s12910-024-01085-1","url":null,"abstract":"<p><strong>Introduction: </strong>Globally, healthcare providers (HCPs), hospital administrators, patients and their caretakers are increasingly confronted with complex moral, social, cultural, ethical, and legal dilemmas during clinical care. In high-income countries (HICs), formal and informal clinical ethics support services (CESSs) have been used to resolve bioethical conflicts among HCPs, patients, and their families. There is limited evidence about mechanisms used to resolve these issues as well as experiences and perspectives of the stakeholders that utilize them in most African countries including Uganda.</p><p><strong>Methods: </strong>This phenomenological qualitative study utilized in-depth interviews (IDIs) and focus group discussions (FGDs) to collect data from Uganda Cancer Institute (UCI) staff, patients, and caretakers who were purposively selected. Data was analyzed deductively and inductively yielding themes and sub-themes that were used to develop a codebook.</p><p><strong>Results: </strong>The study revealed there was no formal committee or mechanism dedicated to resolving ethical dilemmas at the UCI. Instead, ethical dilemmas were addressed in six forums: individual consultations, tumor board meetings, morbidity and mortality meetings (MMMs), core management meetings, rewards and sanctions committee meetings, and clinical departmental meetings. Participants expressed apprehension regarding the efficacy of these fora due to their non-ethics related agendas as well as members lacking training in medical ethics and the necessary experience to effectively resolve ethical dilemmas.</p><p><strong>Conclusion: </strong>The fora employed at the UCI to address ethical dilemmas were implicit, involving decisions made through various structures without the guidance of personnel well-versed in medical or clinical ethics. There was a strong recommendation from participants to establish a multidisciplinary clinical ethics committee comprising members who are trained, skilled, and experienced in medical and clinical ethics.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"87"},"PeriodicalIF":3.0,"publicationDate":"2024-08-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11312825/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141914667","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
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