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Understanding cultural values, norms and beliefs that may impact participation in genome-editing related research: Perspectives of local communities in Botswana. 了解可能影响参与基因组编辑相关研究的文化价值观、规范和信仰:博茨瓦纳当地社区的观点。
IF 2.2 3区 哲学 Q3 ETHICS Pub Date : 2024-01-11 DOI: 10.1111/dewb.12440
Setlhomo Koloi-Keaikitse, Mary Kasule, Irene Kwape, Dudu Jankie, Dimpho Ralefala, Dolly Mogomotsi Ntseane, Gaonyadiwe George Mokone

Gene-editing research is a complex science and foreign in most communities including Botswana. Adopting a qualitative deliberative framework with 109 participants from 7 selected ethnic communities in Botswana, we explored the perceptions of local communities on cultural values, norms, and beliefs that may motivate or deter likely participation in the use of gene-editing related research. What emerged as the ethnic community's motivators for research participation include the potential for gene-editing technologies to promote access to individualized medications, and the possibility of protecting family members from genetic related diseases. Deterrents for research participation include cultural values such as implications of lineage for chieftainship, trust, fear or anxiety, uncertainty, and sensitivity on the use of gene-editing. Findings of our study have implications for continuous engagement with local communities to explore potential ways of addressing cultural sensitivities that can further deter their participation in future gene-editing related research.

基因编辑研究是一门复杂的科学,在包括博茨瓦纳在内的大多数社区都是陌生的。我们采用定性审议框架,与来自博茨瓦纳 7 个选定民族社区的 109 名参与者共同探讨了当地社区对文化价值观、规范和信仰的看法,这些价值观、规范和信仰可能会激励或阻止人们参与基因编辑相关研究的使用。少数民族社区参与研究的动机包括基因编辑技术促进获得个性化药物的潜力,以及保护家庭成员免受遗传相关疾病的可能性。阻碍参与研究的因素包括文化价值观,如血统对酋长身份的影响、信任、恐惧或焦虑、不确定性以及对基因编辑使用的敏感性。我们的研究结果对继续与当地社区合作,探索解决文化敏感性的潜在方法具有重要意义,这些文化敏感性可能会进一步阻碍他们参与未来的基因编辑相关研究。
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引用次数: 0
Retraction of health science articles by researchers in Latin America and the Caribbean: A scoping review. 拉丁美洲和加勒比地区研究人员撤回健康科学文章的情况:范围审查。
IF 2.2 3区 哲学 Q3 ETHICS Pub Date : 2024-01-09 DOI: 10.1111/dewb.12439
Percy Herrera-Añazco, Daniel Fernandez-Guzman, Fernanda Barriga-Chambi, Jerry K Benites-Meza, Brenda Caira-Chuquineyra, Vicente Aleixandre Benites-Zapata

We aimed to conduct a scoping review to assess the profile of retracted health sciences articles authored by individuals affiliated with academic institutions in Latin America and the Caribbean (LAC). We systematically searched seven databases (PubMed, Scopus, Web of Science, Embase, Medline/Ovid, Scielo, and LILACS). We included articles published in peer-reviewed journals between 2003 and 2022 that had at least one author with an institutional affiliation in LAC. Data were collected on the year of publication, study design, authors' countries of origin, number of authors, subject matter of the manuscript, scientific journals of publication, retraction characteristics, and reasons for retraction. We included 147 articles, the majority being observational studies (41.5%). The LAC countries with the highest number of retractions were Brazil (n = 69), Colombia (n = 16), and Mexico (n = 15). The areas of study with the highest number of retractions were infectology (n = 21) and basic sciences (n = 15). A retraction label was applied to 89.1% of the articles, 70.7% were retracted by journal editors, and 89.1% followed international retraction guidelines. The primary reasons for retraction included errors in procedures or data collection (n = 39), inconsistency in results or conclusions (n = 37), plagiarism (n = 21), and suspected scientific fraud (n = 19). In conclusion, most retractions of scientific publications in health sciences in LAC adhered to international guidelines and were linked to methodological issues in execution and scientific misconduct. Efforts should be directed toward ensuring the integrity of scientific research in the field of health.

我们旨在进行一次范围界定审查,以评估拉丁美洲和加勒比地区(LAC)学术机构所属个人撰写的健康科学论文被撤稿的概况。我们系统检索了七个数据库(PubMed、Scopus、Web of Science、Embase、Medline/Ovid、Scielo 和 LILACS)。我们收录了 2003 年至 2022 年间在同行评审期刊上发表的文章,这些文章的至少一位作者与拉丁美洲和加勒比地区的机构有关联。收集的数据包括发表年份、研究设计、作者原籍国、作者人数、稿件主题、发表期刊、撤稿特征和撤稿原因。我们共收录了 147 篇文章,其中大部分为观察性研究(41.5%)。撤稿数量最多的拉丁美洲和加勒比国家是巴西(69 篇)、哥伦比亚(16 篇)和墨西哥(15 篇)。撤稿数量最多的研究领域是感染学(21 篇)和基础科学(15 篇)。89.1%的文章贴有撤稿标签,70.7%由期刊编辑撤稿,89.1%遵循国际撤稿指南。撤稿的主要原因包括程序或数据收集错误(39 篇)、结果或结论不一致(37 篇)、抄袭(21 篇)和涉嫌科学欺诈(19 篇)。总之,拉丁美洲和加勒比地区卫生科学出版物的撤稿大多符合国际准则,并与执行方法问题和科学不端行为有关。应努力确保卫生领域科学研究的完整性。
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引用次数: 0
THANK YOU TO DEVELOPING WORLD BIOETHICS REVIEWERS 感谢发展中国家生物伦理审查员
IF 2.2 3区 哲学 Q3 ETHICS Pub Date : 2023-12-12 DOI: 10.1111/dewb.12433
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引用次数: 0
A qualitative study on patients' selection in the scarcity of resources in the COVID-19 pandemic in a communal culture 关于在社区文化中 COVID-19 大流行的资源稀缺情况下患者选择的定性研究
IF 2.2 3区 哲学 Q3 ETHICS Pub Date : 2023-12-11 DOI: 10.1111/dewb.12438
Ervin Dyah Ayu Masita Dewi, Lara Matter, Astrid Pratidina Susilo, Anja Krumeich
The scarcity of resources during the COVID-19 pandemic caused ethical dilemmas in prioritizing patients for treatment. Medical and ethical guidance only emphasizes clinical procedures but does not consider the sociocultural aspect. This study explored the perception of former COVID-19 patients and their families on the decision-making process of the patient's selection at a time of scarcity of resources. The result will inform the development of an ethical guide for allocating scarce resources that aligns with Indonesian culture. We conducted qualitative research with in-depth interviews between May - December 2022 involving sixteen participants from various cities in Indonesia. We transcribed the interviews and analyzed the results using thematic analysis. This study found that doctor's decisions often differed from patient's expectations in allocating scarce resources, and therefore, it should be communicated appropriately. Medical decisions were not sufficiently made ethically, but must also be made communicatively. In Indonesia's strong communal culture, community involvement was essential to distributing limited resources. A better approach to ethical education, including adequate communication skills, is necessary to prepare health professionals for facing unpredictable future pandemics.
在 COVID-19 大流行期间,由于资源匮乏,在确定患者治疗的优先次序时出现了伦理难题。医疗和伦理指南只强调临床程序,而没有考虑社会文化方面。本研究探讨了前 COVID-19 患者及其家属对资源匮乏时期患者选择决策过程的看法。研究结果将为制定符合印尼文化的稀缺资源分配伦理指南提供参考。我们在 2022 年 5 月至 12 月期间开展了定性研究,对来自印度尼西亚不同城市的 16 名参与者进行了深入访谈。我们转录了访谈内容,并使用主题分析法对结果进行了分析。本研究发现,在分配稀缺资源时,医生的决定往往与患者的期望不同,因此应适当沟通。医疗决策不仅要符合道德规范,还必须以沟通的方式做出。在印度尼西亚浓厚的社区文化中,社区的参与对于分配有限的资源至关重要。有必要采取更好的伦理教育方法,包括适当的沟通技巧,使卫生专业人员做好准备,应对未来不可预测的大流行病。
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引用次数: 0
Legal and ethical principles governing the use of artificial intelligence in radiology services in South Africa. 管理在南非放射服务中使用人工智能的法律和道德原则。
IF 2.2 3区 哲学 Q3 ETHICS Pub Date : 2023-11-27 DOI: 10.1111/dewb.12436
Irvine Sihlahla, Dusty-Lee Donnelly, Beverley Townsend, Donrich Thaldar

Artificial intelligence (AI) will drastically change the healthcare system. Radiology is one speciality that is most affected as AI algorithms are increasingly used in diagnostic imaging. AI-enhanced health technologies will, inter alia, increase workflow efficiency, improve diagnostic accuracy, reduce healthcare-related costs, and help alleviate medical personnel shortages in under-resourced settings. However, the development of AI-enhanced technologies in healthcare is fraught with legal, ethical, and human rights concerns. Currently, the use of AI in South African healthcare is not governed by sui generis legislation or ethical guidance focused exclusively and specifically on AI, although various provisions and principles from law and ethics find application. This article outlines these normative principles and explains their relationship with the extant legal obligations and regulatory framework as applied to the use of AI in radiology services in South Africa. The article concludes with three key recommendations for radiology practitioners using AI in South Africa. These are the need for: vigilant monitoring of AI use in practice, reforms to the liability framework, and appropriate guidance from local regulators and the Health Professions Council of South Africa on the ethical use of AI.

人工智能(AI)将彻底改变医疗体系。随着人工智能算法越来越多地用于诊断成像,放射学是受影响最大的一个专业。除其他外,人工智能增强的卫生技术将提高工作流程效率,提高诊断准确性,降低与卫生保健相关的成本,并有助于缓解资源不足环境中的医务人员短缺问题。然而,人工智能增强技术在医疗保健领域的发展充满了法律、伦理和人权问题。目前,人工智能在南非医疗保健中的使用不受专门针对人工智能的特殊立法或伦理指导的约束,尽管法律和伦理的各种规定和原则都适用。本文概述了这些规范性原则,并解释了它们与适用于在南非放射学服务中使用人工智能的现有法律义务和监管框架的关系。文章最后对南非使用人工智能的放射学从业人员提出了三项关键建议。这些需要是:警惕地监测人工智能在实践中的使用,改革责任框架,以及地方监管机构和南非卫生专业委员会就人工智能的道德使用提供适当指导。
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引用次数: 0
Ethical challenges of conducting and reviewing human genomics research in Malaysia: An exploratory study 在马来西亚进行和审查人类基因组学研究的伦理挑战:一项探索性研究。
IF 0.9 3区 哲学 Q3 ETHICS Pub Date : 2023-11-23 DOI: 10.1111/dewb.12435
Teong Win Zee, Mohammad Firdaus Bin Abdul Aziz, Phan Chia Wei

Even though there is a significant amount of scholarly work examining the ethical issues surrounding human genomics research, little is known about its footing in Malaysia. This study aims to explore the experience of local researchers and research ethics committee (REC) members in developing it in Malaysia. In-depth interviews were conducted from April to May 2021, and the data were thematically analysed. In advancing this technology, both genomics researchers and REC members have concerns over how this research is being developed in the country especially the absence of a clear ethical and regulatory framework at the national level as a guidance. However, this study argues that it is not a salient issue as there are international guidelines in existence and both researchers and RECs will benefit from a training on the guidelines to ensure genomics research can be developed in an ethical manner.

尽管有大量的学术工作研究围绕人类基因组学研究的伦理问题,但对其在马来西亚的立足点知之甚少。本研究旨在探讨本地研究人员和研究伦理委员会(REC)成员在马来西亚发展它的经验。我们于2021年4月至5月进行了深度访谈,并对数据进行了主题分析。在推进这项技术的过程中,基因组学研究人员和REC成员都对这项研究在国内的发展方式感到担忧,特别是在国家层面缺乏明确的伦理和监管框架作为指导。然而,这项研究认为,这不是一个突出的问题,因为存在着国际指导方针,而且科学家和rec都将从指导方针的培训中受益,以确保基因组学研究能够以道德的方式发展。
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引用次数: 0
Ration health resources to save more statistical lives from cervical cancer death in Africa: Why are we allowing them to die? 分配卫生资源,从统计上挽救非洲宫颈癌死亡的更多生命:我们为什么要让他们死亡?
IF 0.9 3区 哲学 Q3 ETHICS Pub Date : 2023-11-15 DOI: 10.1111/dewb.12434
Adolf Kofi Awua

Public health interventions, particularly in low- and middle-income countries (LMICs), are implemented with the never-ending challenge of limited resources and the ever-present challenge of choosing between interventions. While necessary, the application of ethical analysis is absent in most of such decision-making, resulting in fewer favourable consequences. In applying ethical principles to the saving of women from the burden of cervical cancer, I argue in favour of saving statistical lives (investing in prevention) in LMICs, by mapping the principles of justice in resource allocation to the prevailing circumstance. The key facts in this circumstance are that providing treatment (which is saving identified lives), involves mostly providing palliative treatment, which is associated with a high likelihood of death among the identified lives while undergoing treatment or shortly thereafter. I focus on the dilemma of having a national cancer prevention program versus the expansion of cancer treatment facilities.

在实施公共卫生干预措施时,特别是在低收入和中等收入国家,面临着资源有限这一永无止境的挑战,以及在干预措施之间进行选择这一始终存在的挑战。虽然有必要,但在大多数此类决策中缺乏伦理分析的应用,导致较少的有利结果。在将伦理原则应用于拯救妇女免于子宫颈癌的负担时,我主张通过将资源分配中的正义原则映射到当前情况,从而在统计上挽救中低收入国家的生命(投资于预防)。在这种情况下的关键事实是,提供治疗(即挽救已确定的生命)主要涉及提供姑息治疗,这与已确定的生命在接受治疗期间或治疗后不久死亡的可能性很大有关。我关注的是国家癌症预防项目与癌症治疗设施扩张之间的两难选择。
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引用次数: 0
Bioethics and witnessing 生物伦理学和见证。
IF 2.2 3区 哲学 Q3 ETHICS Pub Date : 2023-11-06 DOI: 10.1111/dewb.12432
Debora Diniz
<p>Bioethics is about abstract reasoning and philosophical thinking.1 It is also about listening and telling stories; it is about ethical care and political imagination. In my way of doing bioethics, I need ethnography—the process of listening, feeling, and sharing lives—to understand how and why bioethical issues, such as life and death, care and abandonment, power and need, are lived concretely by people. It is a constant tension between the abstract concepts and the lived lives of people.</p><p>I know that it is not a shared definition, but doing bioethics means being an accompaniment-witness with the duty to speak the truth.2 It is not just the academic truth of methods and reasonable arguments; it is a truth that respects people's lives and actively seeking to challenge the oppressive powers. There is always a risk in doing bioethics as an accompaniment-witness—the risk of not properly listening to people and failing to fully respect their stories. I write academic papers, I make documentary films, I photograph fragments of survival and care, yet I struggle with not knowing how to best share my findings with people that matters the most: those at the center of the needs. To listen to them is to receive fragments of life and intimacy: my writings and images are formats for sharing back what they offer; and they are always precarious.</p><p>The ethical compromise to, first, share with them the academic work and to be challenged by them is one of the reasons that led me to make films and take pictures—as these are artistic ways of expressing my understandings in formats that are not just the jargon of academic papers; films and photos are languages that cross our multiple communities of expression. I always share my academic outcomes with women before moving from the role of listener to the public writer. Usually what happens is that they watch the film and recommend edits; they select the pictures they prefer. Not rarely, they ask me for new shots or new poses. They tell new fragments of life, and I am invited to be a listener again. We redo the work together.</p><p>I can imagine some readers arguing that this community engagement might contaminate my work or even introduce a pervasive bias into my writings. I have no counterarguments to this position, as I do not seek neutrality in my work, but rather I want to be reliable to the communities of practice in which I engage. And the academic community is just one of them. The gesture of sharing my writing or films with the communities is not the same as accepting their narratives or perspectives on the ethical issues: I am the author of my work, and the responsibility of how I frame their narratives is mine. It is more a movement of having them as my first interlocutors for whatever I want to say about their lives. As I do with my academic colleagues, I will open a conversation about my work, and in case of deep disagreements, we will find solutions to deal with them. As in academic dialogues, i
生物伦理涉及抽象推理和哲学思考1 ,也涉及倾听和讲述故事;涉及伦理关怀和政治 想象力。在我从事生命伦理学研究的过程中,我需要人种学--倾听、感受和分享生活的过程--来理解生命伦理学问题,如生与死、关爱与遗弃、权力与需求,是如何以及为什么被人们具体地生活着。我知道这并不是一个共同的定义,但从事生命伦理学工作就意味着要成为一个有责任说出真相的陪伴者--见证者。2 这不仅仅是方法和合理论据的学术真相,而是一种尊重人们的生活并积极寻求挑战压迫性权力的真相。作为一名陪伴者--见证者,在从事生命伦理学研究的过程中始终存在着风险--那就是不能正确地倾听人们的声音,不能充分尊重他们的故事。我撰写学术论文,拍摄纪录片,拍摄生存与关怀的片段,但我却苦于不知道如何才能最好地与最重要的人(即那些处于需求中心的人们)分享我的研究成果。首先,与她们分享学术成果,并接受她们的挑战,这种伦理上的妥协是促使我拍摄电影和照片的原因之一--因为这是用艺术的方式表达我的理解,而不仅仅是学术论文的行话;电影和照片是跨越我们多种表达群体的语言。在从倾听者的角色转变为公众作家之前,我总是与女性分享我的学术成果。通常情况下,她们会观看影片并提出剪辑建议;她们会选择自己喜欢的图片。她们要求我拍摄新的镜头或摆出新的姿势,这种情况并不少见。他们讲述新的生活片段,而我被邀请再次成为聆听者。我可以想象,有些读者会说,这种社区参与可能会污染我的作品,甚至在我的作品中引入普遍的偏见。对于这个观点,我没有反驳的理由,因为我在工作中并不寻求中立,而是希望我所参与的实践社区是可靠的。学术界只是其中之一。与实践社区分享我的作品或电影并不等于接受他们对伦理问题的叙述或观点:我是我的作品的作者,如何构建他们的叙述是我的责任。这更像是让他们成为我的第一对话者,无论我想讲述他们的生活是什么。就像我与学术界的同事一样,我会就我的工作展开对话,如果有深刻的分歧,我们会找到解决的办法。与学术对话一样,我们并不是接受所有的批评,但至少我们会提供时间和空间,做一个倾听者。我们的目标是在他们没有参与的空间里,特别是在有权力保护他们的需求和改变不稳定状况的空间里,与他们对话,谈论他们。3 生物伦理学家是一个向权力说出真相的见证人。向权力说出真相总是有风险的--压迫体系,如父权制和种族主义势力,希望保持流传规范的霸权地位,他们希望控制法律和政策。我是一名从事生命伦理学研究的女权主义者,有人可能会质疑我关于如何实现性别公正的伦理和政治立场;在了解了彼此对生命的承诺之后,我们也可能会在原则问题上产生分歧。但首先,我需要知道对话者是如何了解需求、关爱、遗弃、生存或福祉的,他们是从书本上学到生命伦理学的,还是也是从人身上学到的。我希望在我的论点和民族志中,在我的学术严谨性和我作为陪同见证人的责任中,都能接受挑战。我认为我的责任还包括挑战那些不同意 "一个更加公平的世界对所有人来说都是一个更好的空间 "这一观点的人。我所实践的生命伦理学并没有脱离想象力和情感--因为这些是倾听和理解人们故事的核心。我们需要拓展想象力,了解他人对其生活需求的感受。见证不仅与他人有关,也与我们有关。这是对作为一名学术作家和演讲者的特权负责的问题。我不确定这是否是从事生命伦理学研究的 "正确方式"。但这是一种可能的方式:诗学与美学的结合;伦理与政治的结合;在此在彼的结合。 作者声明无利益冲突。
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引用次数: 0
Family-based consent and motivation for familial organ donation in Bangladesh: An empirical exploration 孟加拉国家庭器官捐献的基于家庭的同意和动机:一项实证研究。
IF 0.9 3区 哲学 Q3 ETHICS Pub Date : 2023-10-19 DOI: 10.1111/dewb.12431
Md. Sanwar Siraj PhD

The government of Bangladesh approved the human organ transplantation law in 1999 and updated it in 2018. This legislation approved both living-related donor and posthumous organ transplantation. The law only allows family members to legally donate organs to their relatives. The main focus of this study was to explore how Bangladeshis make donation decisions on familial organs for transplantation. My ethnographic fieldwork with forty participants (physicians and nurses, a healthcare administrator, organ donors, recipients, and their relatives) disclosed that the organ donation decision was family-based. An assessment of the relationship between religion, culture, and biomedicine leads to the conclusion that deciding on donating organs to relatives is primarily family-based and is perceived to be steeped in Islamic ethical principles and religious cultural tradition. The family-based consent and motivation for donor-recipient pair organ transplantation strengthen an altruistic environment for the family and act as the moral and legal authority that ensures ethical healthcare outcomes for Bangladeshis.

孟加拉国政府于1999年批准了《人体器官移植法》,并于2018年对其进行了更新。这项立法批准了活体捐赠者和死后器官移植。法律只允许家庭成员合法地向亲属捐献器官。这项研究的主要焦点是探讨孟加拉国人如何对用于移植的家族器官做出捐赠决定。我对40名参与者(医生和护士、医疗管理人员、器官捐献者、接受者及其亲属)进行的民族志实地调查显示,器官捐献的决定是基于家庭的。对宗教、文化和生物医学之间关系的评估得出的结论是,决定向亲属捐赠器官主要是基于家庭,并被认为深受伊斯兰伦理原则和宗教文化传统的影响。基于家庭的供体-受体对器官移植的同意和动机加强了家庭的无私环境,并成为确保孟加拉国人获得合乎道德的医疗保健结果的道德和法律权威。
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引用次数: 0
Euthanasia in Colombia: Experience in a palliative care program and bioethical reflections 哥伦比亚安乐死:姑息治疗项目的经验和生物伦理思考。
IF 0.9 3区 哲学 Q3 ETHICS Pub Date : 2023-10-18 DOI: 10.1111/dewb.12430
Marcela Erazo-Munoz, Diana Borda-Restrepo, Johana Benavides-Cruz

The increased prevalence of advanced-stage chronic diseases has augmented the need for palliative care teams. In Colombia, although the legislation promotes palliative care development, people still die without receiving management from a palliative care team. In addition, judiciary regulations regarding euthanasia have generated public confusion and ethical conflicts among members of the palliative care teams. Therefore, this study aimed to perform a bioethical reflection on the relationship between palliative care and euthanasia supported by data on euthanasia requests in a palliative care program. This reflection is based on retrospective and descriptive observational data, collected in two highly complex hospitals in Bogotá, Colombia. A total of 50 euthanasia requests were identified, of which 62% met the defined criteria, 16% did not, and 22% were not considered by the interdisciplinary committee for the right to die with dignity due to early death. All patients were treated and followed up by a palliative care team until their death. This study considered that palliative care could be a complement management for patients requesting euthanasia based on their experience by supporting the decision-making, alleviating suffering, and providing emotional support in the last days of life.

晚期慢性病患病率的增加增加了对姑息治疗团队的需求。在哥伦比亚,尽管该立法促进了姑息治疗的发展,但仍有人在没有接受姑息治疗团队管理的情况下死亡。此外,有关安乐死的司法法规在姑息治疗团队成员之间引发了公众困惑和道德冲突。因此,本研究旨在通过姑息治疗项目中安乐死请求的数据,对姑息治疗和安乐死之间的关系进行生物伦理反思。这一反思基于在哥伦比亚波哥大的两家高度复杂的医院收集的回顾性和描述性观察数据。共确定了50项安乐死请求,其中62%符合规定的标准,16%不符合,22%没有得到早逝有尊严死亡权利跨学科委员会的考虑。所有患者都接受了姑息治疗小组的治疗和随访,直到死亡。这项研究认为,姑息治疗可以根据患者的经历,通过支持决策、减轻痛苦和在生命的最后几天提供情感支持,对请求安乐死的患者进行补充管理。
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引用次数: 0
期刊
Developing World Bioethics
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