Medicine Health Care and Philosophy最新文献

{"title":"An \"ethics of strangers\"? On knowing the patient in clinical ethics.","authors":"Joar Björk, Anna Hirsch","doi":"10.1007/s11019-024-10213-y","DOIUrl":"10.1007/s11019-024-10213-y","url":null,"abstract":"<p><p>The shape and function of ethical imperatives may vary if the context is an interaction between strangers, or those who are well acquainted. This idea, taken up from Stephen Toulmin's distinction between an \"ethics of strangers\" and an \"ethics of intimacy\", can be applied to encounters in healthcare. There are situations where healthcare personnel (HCP) know their patients (corresponding to an \"ethics of intimacy\") and situations where HCP do not know their patients (corresponding to \"an ethics of strangers\"). Does it make a difference for normative imperatives that follow from central concepts and principles in medical ethics whether HCP know their patients or not? In our view, this question has not yet been answered satisfactorily. Once we have clarified what is meant by \"knowing the patient\", we will show that the distinction is particularly relevant with regard to some thorny questions of autonomy in healthcare (e.g., regarding advance directives or paternalism in the name of autonomy), whereas the differences with regard to imperatives following from the principles of justice and beneficence seem to be smaller. We provide a detailed argument for why knowing the patient is ethically valuable in encounters in healthcare. Consequently, healthcare systems should provide fertile ground for HCP to get to know their patients, and structures that foster therapeutic continuity. For this to succeed, a number of questions still need to be clarified, which is an important task for medical ethics.</p>","PeriodicalId":47449,"journal":{"name":"Medicine Health Care and Philosophy","volume":" ","pages":"389-397"},"PeriodicalIF":2.3,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11310239/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141293834","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Toward a new clinical pragmatism: method in clinical ethics consultation.","authors":"Ryan Marshall Felder","doi":"10.1007/s11019-024-10219-6","DOIUrl":"10.1007/s11019-024-10219-6","url":null,"abstract":"<p><p>In this paper, I leverage the pragmatist tradition in philosophy, the collective wisdom of scholarship in clinical ethics consultation, and earlier attempts to apply pragmatism in clinical ethics to develop a new vision of clinical ethics practice called New Clinical Pragmatism. It argues that clinical ethics methodology, from the New Clinical Pragmatist's perspective, amounts to the recommendation that consultants should customize a methodological approach, drawing on the various available methods, depending on the demands of the specific case, and should avoid attempts to identify a 'true' methodology but to the incoherence and inevitable failure of those attempts. I argue that pragmatism's emphasis on practical wisdom and experimentation allow the New Clinical Pragmatist to do this while avoiding irrationality in choosing methods. I discuss how the New Clinical Pragmatist gives a unique, constructive perspective on key aspects of clinical ethics consultation such as the choice of common morality vs. internal morality of medicine approaches, process standards, bioethics mediation, and narrative ethics, and suggest how New Clinical Pragmatism's relaxed approach to choice of methodology encourages consultants to balance attention to the particulars of the case with knowledge of what the many insightful scholars of clinical ethics methodology have found useful in the past. I also argue that New Clinical Pragmatism is consistent with efforts to professionalize clinical ethics consultation.</p>","PeriodicalId":47449,"journal":{"name":"Medicine Health Care and Philosophy","volume":" ","pages":"445-454"},"PeriodicalIF":2.3,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141617369","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A contextual integrity approach to genomic information: what bioethics can learn from big data ethics.","authors":"Nina F de Groot","doi":"10.1007/s11019-024-10211-0","DOIUrl":"10.1007/s11019-024-10211-0","url":null,"abstract":"<p><p>Genomic data is generated, processed and analysed at an increasingly rapid pace. This data is not limited to the medical context, but plays an important role in other contexts in society, such as commercial DNA testing, the forensic setting, archaeological research, and genetic surveillance. Genomic information also crosses the borders of these domains, e.g. forensic use of medical genetic information, insurance use of medical genomic information, or research use of commercial genomic data. This paper (1) argues that an informed consent approach for genomic information has limitations in many societal contexts, and (2) seeks to broaden the bioethical debate on genomic information by suggesting an approach that is applicable across multiple societal contexts. I argue that the contextual integrity framework, a theory rooted in information technology and big data ethics, is an effective tool to explore ethical challenges that arise from genomic information within a variety of different contexts. Rather than focusing on individual control over information, the contextual integrity approach holds that information should be shared and protected according to the norms that govern certain distinct social contexts. Several advantages of this contextual integrity approach will be discussed. The paper concludes that the contextual integrity framework helps to articulate and address a broad spectrum of ethical, social, and political factors in a variety of different societal contexts, while giving consideration to the interests of individuals, groups, and society at large.</p>","PeriodicalId":47449,"journal":{"name":"Medicine Health Care and Philosophy","volume":" ","pages":"367-379"},"PeriodicalIF":2.3,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11310229/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141307110","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Navigating the uncommon: challenges in applying evidence-based medicine to rare diseases and the prospects of artificial intelligence solutions.","authors":"Olivia Rennie","doi":"10.1007/s11019-024-10206-x","DOIUrl":"10.1007/s11019-024-10206-x","url":null,"abstract":"<p><p>The study of rare diseases has long been an area of challenge for medical researchers, with agonizingly slow movement towards improved understanding of pathophysiology and treatments compared with more common illnesses. The push towards evidence-based medicine (EBM), which prioritizes certain types of evidence over others, poses a particular issue when mapped onto rare diseases, which may not be feasibly investigated using the methodologies endorsed by EBM, due to a number of constraints. While other trial designs have been suggested to overcome these limitations (with varying success), perhaps the most recent and enthusiastically adopted is the application of artificial intelligence to rare disease data. This paper critically examines the pitfalls of EBM (and its trial design offshoots) as it pertains to rare diseases, exploring the current landscape of AI as a potential solution to these challenges. This discussion is also taken a step further, providing philosophical commentary on the weaknesses and dangers of AI algorithms applied to rare disease research. While not proposing a singular solution, this article does provide a thoughtful reminder that no 'one-size-fits-all' approach exists in the complex world of rare diseases. We must balance cautious optimism with critical evaluation of new research paradigms and technology, while at the same time not neglecting the ever-important aspect of patient values and preferences, which may be challenging to incorporate into computer-driven models.</p>","PeriodicalId":47449,"journal":{"name":"Medicine Health Care and Philosophy","volume":" ","pages":"269-284"},"PeriodicalIF":2.3,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140899922","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A critical and systematic literature review of epistemic justice applied to healthcare: recommendations for a patient partnership approach.","authors":"Catherine Isadora Côté","doi":"10.1007/s11019-024-10210-1","DOIUrl":"10.1007/s11019-024-10210-1","url":null,"abstract":"<p><p>Invalidation from healthcare practitioners is an experience shared by many patients, especially those marginalized or living with contested conditions (e.g., chronic pain, fibromyalgia, etc.). Invalidation can include not taking someone's testimony seriously, imposing one's thoughts, discrediting someone's emotions, or not perceiving someone's testimony as equal and competent. Epistemic injustices, that is, the disqualification of a person as a knower, are a form of invalidation. Epistemic injustices have been used as a theoretical framework to understand invalidation that occurs in the patient-healthcare provider relationship. However, to date, the different recommendations to achieve epistemic justice have not been listed, analyzed, nor compared yet. This paper aims at better understanding the state of the literature and to critically review possible avenues to achieve epistemic justice in healthcare. A systematic and critical review of the existing literature on epistemic justice was conducted. The search in four databases identified 629 articles, from which 35 were included in the review. Strategies to promote epistemic justice that can be applied to healthcare are mapped in the literature and sorted in six different approaches to epistemic justice, including virtuous, structural, narrative, cognitive, and partnership approaches, as well as resistance strategies. These strategies are critically appraised. A patient partnership approach based on the Montreal Model, implemented at all levels of healthcare systems, seems promising to promote epistemic justice in healthcare.</p>","PeriodicalId":47449,"journal":{"name":"Medicine Health Care and Philosophy","volume":" ","pages":"455-477"},"PeriodicalIF":2.3,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141238674","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Learning from disability studies to introduce the role of the individual to naturalistic accounts of disease.","authors":"Ozan Altan Altinok","doi":"10.1007/s11019-024-10216-9","DOIUrl":"10.1007/s11019-024-10216-9","url":null,"abstract":"<p><p>Disability studies have been successfully focusing on individuals' lived experiences, the personalization of goals, and the constitution of the individual in defining disease and restructuring public understandings of disability. Although they had a strong influence in the policy making and medical modeling of disease, their framework has not been translated to traditional naturalistic accounts of disease. I will argue that, using new developments in evolutionary biology (Extended Evolutionary Synthesis [EES] about questions of proper function) and behavioral ecology (Niche conformance and construction about the questions of reference classes in biostatistics accounts), the main elements of the framework of disability studies can be used to represent life histories at the conceptual level of the two main \"non-normative\" accounts of disease. I chose these accounts since they are related to medicine in a more descriptive way. The success of the practical aspects of disability studies this way will be communicated without causing injustice to the individual since they will represent the individuality of the patient in two main naturalistic accounts of disease: the biostatistical account and the evolutionary functional account. Although most accounts criticizing the concept of disease as value-laden do not supply a positive element, disability studies can supply a good point for descriptive extension of the concept through inclusion of epistemic agency.</p>","PeriodicalId":47449,"journal":{"name":"Medicine Health Care and Philosophy","volume":" ","pages":"407-417"},"PeriodicalIF":2.3,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11310279/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141493862","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Pain and temporality: a merleau-pontyian approach.","authors":"Judith N Wagner","doi":"10.1007/s11019-024-10205-y","DOIUrl":"10.1007/s11019-024-10205-y","url":null,"abstract":"<p><p>Chronic pain is a common disorder with enormous sociomedical importance. A major part of primary and secondary costs of illness is caused by the various pain syndromes. Nociception - the sensory perception of a painful stimulus - is a complex process relying on an intricate system of anatomical, neurophysiological and biochemical networks. This applies even more so to pain - the state of experiencing a nociceptive event, of interpreting it in terms of meaning for the affected individual and of suffering a range of emotions it elicits. This intricacy renders it obvious, that the empirical medical sciences alone cannot explain all aspects of pain. Hence, it has also become a focus of phenomenological research. One aspect of these investigations is the interaction of pain and the perception of the lived body's spatiality. The focus of this article will build on these concepts to develop a construct of the alteration of temporality caused by chronic pain and the effects this spells out for the affected subject. To this end, I will primarily draw on Merleau-Ponty's ideas of the lived body as well as on theories of enactivism and embodiment. I will also point out parallels to neuroscientific data, thereby demonstrating the proximity of phenomenology and neuroscience. A possible partial solution to the pain dilemma may be derived from psychology: techniques relying on cognitive behavioural intervention, awareness training, and existential analysis may provide alleviation to patients suffering from chronic pain.</p>","PeriodicalId":47449,"journal":{"name":"Medicine Health Care and Philosophy","volume":" ","pages":"321-331"},"PeriodicalIF":2.3,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11310234/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140960179","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Epistemic (in)justice, social identity and the Black Box problem in patient care.","authors":"Muneerah Khan, Cornelius Ewuoso","doi":"10.1007/s11019-024-10194-y","DOIUrl":"10.1007/s11019-024-10194-y","url":null,"abstract":"<p><p>This manuscript draws on the moral norms arising from the nuanced accounts of epistemic (in)justice and social identity in relational autonomy to normatively assess and articulate the ethical problems associated with using AI in patient care in light of the Black Box problem. The article also describes how black-boxed AI may be used within the healthcare system. The manuscript highlights what needs to happen to align AI with the moral norms it draws on. Deeper thinking - from other backgrounds other than decolonial scholarship and relational autonomy - about the impact of AI on the human experience needs to be done to appreciate any other barriers that may exist. Future studies can take up this task.</p>","PeriodicalId":47449,"journal":{"name":"Medicine Health Care and Philosophy","volume":" ","pages":"227-240"},"PeriodicalIF":2.1,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11076305/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139730687","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Living ethics: a stance and its implications in health ethics.","authors":"Eric Racine, Sophie Ji, Valérie Badro, Aline Bogossian, Claude Julie Bourque, Marie-Ève Bouthillier, Vanessa Chenel, Clara Dallaire, Hubert Doucet, Caroline Favron-Godbout, Marie-Chantal Fortin, Isabelle Ganache, Anne-Sophie Guernon, Marjorie Montreuil, Catherine Olivier, Ariane Quintal, Abdou Simon Senghor, Michèle Stanton-Jean, Joé T Martineau, Andréanne Talbot, Nathalie Tremblay","doi":"10.1007/s11019-024-10197-9","DOIUrl":"10.1007/s11019-024-10197-9","url":null,"abstract":"<p><p>Moral or ethical questions are vital because they affect our daily lives: what is the best choice we can make, the best action to take in a given situation, and ultimately, the best way to live our lives? Health ethics has contributed to moving ethics toward a more experience-based and user-oriented theoretical and methodological stance but remains in our practice an incomplete lever for human development and flourishing. This context led us to envision and develop the stance of a \"living ethics\", described in this inaugural collective and programmatic paper as an effort to consolidate creative collaboration between a wide array of stakeholders. We engaged in a participatory discussion and collective writing process known as instrumentalist concept analysis. This process included initial local consultations, an exploratory literature review, the constitution of a working group of 21 co-authors, and 8 workshops supporting a collaborative thinking and writing process. First, a living ethics designates a stance attentive to human experience and the role played by morality in human existence. Second, a living ethics represents an ongoing effort to interrogate and scrutinize our moral experiences to facilitate adaptation of people and contexts. It promotes the active and inclusive engagement of both individuals and communities in envisioning and enacting scenarios which correspond to their flourishing as authentic ethical agents. Living ethics encourages meaningful participation of stakeholders because moral questions touch deeply upon who we are and who we want to be. We explain various aspects of a living ethics stance, including its theoretical, methodological, and practical implications as well as some barriers to its enactment based on the reflections resulting from the collaborative thinking and writing process.</p>","PeriodicalId":47449,"journal":{"name":"Medicine Health Care and Philosophy","volume":" ","pages":"137-154"},"PeriodicalIF":2.1,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11076378/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140121076","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"No (true) right to die: barriers in access to physician-assisted death in case of psychiatric disease, advanced dementia or multiple geriatric syndromes in the Netherlands.","authors":"Caroline van den Ende, Eva Constance Alida Asscher","doi":"10.1007/s11019-023-10190-8","DOIUrl":"10.1007/s11019-023-10190-8","url":null,"abstract":"<p><p>Even in the Netherlands, where the practice of physician-assisted death (PAD) has been legalized for over 20 years, there is no such thing as a 'right to die'. Especially patients with extraordinary requests, such as a wish for PAD based on psychiatric suffering, advanced dementia, or (a limited number of) multiple geriatric syndromes, encounter barriers in access to PAD. In this paper, we discuss whether these barriers can be justified in the context of the Dutch situation where PAD is legally permitted for those who suffer unbearably and hopelessly as a result of medical conditions. Furthermore, we explore whether there are options to address some of the barriers or their consequences, both within the Dutch legal framework or by adjusting the legal framework, and whether these options are feasible. We conclude that although there are insufficient arguments to overrule the doctor's freedom of conscience in the Netherlands, there are ways to address some of the barriers, mainly by offering support to doctors that would be willing to support a request. Moreover, we believe it is morally required to reduce or mitigate where possible the negative consequences of the barriers for patients, such as the long waiting time for those who suffer from psychiatric disorders, because it is unlikely the adjustments suggested to the system will ensure reasonable access for these patient groups.</p>","PeriodicalId":47449,"journal":{"name":"Medicine Health Care and Philosophy","volume":" ","pages":"181-188"},"PeriodicalIF":2.1,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11076306/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139906601","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}