BMC Medical Ethics最新文献

{"title":"Racial issues in psychiatry: a thematic analysis of an initial health equity educational activity for medical students.","authors":"Paige Pickerl, Tanya Sorrell, Mennefer Blue, Kamaria Patterson, Neeral Sheth, Sahara Givens","doi":"10.1186/s12910-025-01215-3","DOIUrl":"https://doi.org/10.1186/s12910-025-01215-3","url":null,"abstract":"<p><strong>Introduction: </strong>Current research documents both the historical impact of racism in healthcare as well as studies piloting antiracist interventions as part of medical training to ameliorate its stigma, bias, and consequences in medicine. The purpose of this study was to qualitatively analyze the impact of a one session lecture surrounding racial issues in psychiatry on third-year medical students' thoughts and reflections surrounding the content.</p><p><strong>Methodology: </strong>Remote methodologies were used to engage medical students in a lecture created by a major University's Substance Use Disorder Center of Excellence to address the legacy of racial issues in psychiatry as well as present interventions. The team collected anonymous evaluations via anonymous chat submission after each lecture. Qualitative evaluation data were compiled from 108 students across 11 sessions over the course of a year. The team reviewed major and minor themes and synthesized following the Standards for Reporting Qualitative Research (SRQR) guidelines for qualitative reporting.</p><p><strong>Results: </strong>We identified the following five themes:1) appreciation and notes on the content itself; 2) how the information presented can impact future clinical care; 3) the interconnectedness of social determinants of health and racism; 4) recognizing power dynamics with patients; and 5) opportunities for future education.</p><p><strong>Conclusion: </strong>Information compiled both from participating students and the available literature can inform future education efforts to build opportunities for antiracist training in medical education.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"53"},"PeriodicalIF":3.0,"publicationDate":"2025-04-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12039112/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144059037","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}

{"title":"Diversity in decentralized clinical trials: prioritizing inclusion of underrepresented groups.","authors":"Tessa I van Rijssel, Johannes J M van Delden, Bart Lagerwaard, Mira G P Zuidgeest, Ghislaine J M W van Thiel","doi":"10.1186/s12910-025-01211-7","DOIUrl":"https://doi.org/10.1186/s12910-025-01211-7","url":null,"abstract":"<p><strong>Background: </strong>The importance of more diversity of study populations in clinical trials is currently widely acknowledged. Decentralized clinical trial (DCT) approaches are presented as a potential means to broaden diversity by eliminating several barriers to participation. However, the precise meaning of, and objectives related to diversity in DCTs remain unclear. Diversity runs the risk of becoming a 'buzzword': widely acknowledged to be important, yet prone to multiple interpretations and challenging to implement in practice. We argue that the aim of increasing diversity in clinical trials requires clear and well-substantiated specifications.</p><p><strong>Methods: </strong>We analyze the concept of diversity and the ethical requirements surrounding fair participant selection within the context of clinical research, in order to further specify and operationalize the aim of increasing diversity in the context of DCTs.</p><p><strong>Results: </strong>Through analyzing the concept of diversity and ethical requirements for fair participant selection, we propose that diversity should be specified in a way that improves the position of the groups that are currently most underrepresented in the research context. In practice, this entails that, in order to contribute to diversity, the selection of participants should prioritize (i) gaining scientific knowledge on groups for which this is lacking, and (ii) inclusion of underrepresented groups in research when appropriate considering a study's objectives, and risks and benefits.</p><p><strong>Conclusions: </strong>Our analysis facilitates translating the aim of increasing diversity with DCTs to more specific and actionable objectives for recruitment and inclusion. Moreover, it contributes to a further specification of the concept of diversity and fair participant selection in research contexts.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"51"},"PeriodicalIF":3.0,"publicationDate":"2025-04-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12020247/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144045409","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}

{"title":"Readability of health research informed consent forms: case of the National Health Research Ethics Committee in Tanzania.","authors":"Renatha Kato, Renatha Joseph, Lazaro Haule, Mwanaidi Kafuye","doi":"10.1186/s12910-025-01200-w","DOIUrl":"https://doi.org/10.1186/s12910-025-01200-w","url":null,"abstract":"<p><strong>Background: </strong>Obtaining informed consent is the practice of respect for persons that gives the right to participants to make autonomous decisions about research participation. The difficult-to-read research informed consent forms (RICFs) hinder comprehension and can expose participants to harm. This study aims to assess the readability of health RICFs for studies approved by the National Health Research Ethics Committee (NatHREC) in Tanzania.</p><p><strong>Methods: </strong>We used a retrospective cross-sectional study design. A total of 266 RICFs were sampled from the NatHREC database using stratified and systematic random sampling strategies. The readability of RICFs was assessed using the Flesch Reading Ease (FRE) and Flesch-Kincaid Readability Grade Level (FKRGL) formulas available in Microsoft Word Office and by manual check. Data were collected using the assessment checklist, analyzed, and presented with SPSS and MS Excel software.</p><p><strong>Results: </strong>Out of 266 RICFs assessed, 65.4% had the recommended page numbers, 81.6% had longer sentences, and 80.5% were difficult to read, necessitating a person to acquire a US grade 10 (Form Four educational level in Tanzania) to understand the presented information. Pearson's correlation coefficient with p-values of < 0.001 and 95% confidence level disclosed that sentence lengths in the RICFs had a statistical association with the difficult reading levels obtained.</p><p><strong>Conclusion: </strong>Findings from this study showed that most of the RICFs were concise in terms of page numbers and word count but had long and difficult sentences. Researchers should assess the readability of RICFs before submitting them for ethical approval. Research Ethics Committees (RECs) should consider inclusion of RICFs readability measurements in the Ethics Guidelines for Health Research. The study recommends further studies to assess the Kiswahili versions of RICFs to determine if the results obtained in this study apply to Kiswahili texts.</p><p><strong>Clinical trial number: </strong>Not applicable.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"50"},"PeriodicalIF":3.0,"publicationDate":"2025-04-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12016158/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144057522","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}

{"title":"Ethical implications related to processing of personal data and artificial intelligence in humanitarian crises: a scoping review.","authors":"Tino Kreutzer, James Orbinski, Lora Appel, Aijun An, Jerome Marston, Ella Boone, Patrick Vinck","doi":"10.1186/s12910-025-01189-2","DOIUrl":"https://doi.org/10.1186/s12910-025-01189-2","url":null,"abstract":"<p><strong>Background: </strong>Humanitarian organizations are rapidly expanding their use of data in the pursuit of operational gains in effectiveness and efficiency. Ethical risks, particularly from artificial intelligence (AI) data processing, are increasingly recognized yet inadequately addressed by current humanitarian data protection guidelines. This study reports on a scoping review that maps the range of ethical issues that have been raised in the academic literature regarding data processing of people affected by humanitarian crises.</p><p><strong>Methods: </strong>We systematically searched databases to identify peer-reviewed studies published since 2010. Data and findings were standardized, grouping ethical issues into the value categories of autonomy, beneficence, non-maleficence, and justice. The study protocol followed Arksey and O'Malley's approach and PRISMA reporting guidelines.</p><p><strong>Results: </strong>We identified 16,200 unique records and retained 218 relevant studies. Nearly one in three (n = 66) discussed technologies related to AI. Seventeen studies included an author from a lower-middle income country while four included an author from a low-income country. We identified 22 ethical issues which were then grouped along the four ethical value categories of autonomy, beneficence, non-maleficence, and justice. Slightly over half of included studies (n = 113) identified ethical issues based on real-world examples. The most-cited ethical issue (n = 134) was a concern for privacy in cases where personal or sensitive data might be inadvertently shared with third parties. Aside from AI, the technologies most frequently discussed in these studies included social media, crowdsourcing, and mapping tools.</p><p><strong>Conclusions: </strong>Studies highlight significant concerns that data processing in humanitarian contexts can cause additional harm, may not provide direct benefits, may limit affected populations' autonomy, and can lead to the unfair distribution of scarce resources. The increase in AI tool deployment for humanitarian assistance amplifies these concerns. Urgent development of specific, comprehensive guidelines, training, and auditing methods is required to address these ethical challenges. Moreover, empirical research from low and middle-income countries, disproportionally affected by humanitarian crises, is vital to ensure inclusive and diverse perspectives. This research should focus on the ethical implications of both emerging AI systems, as well as established humanitarian data management practices.</p><p><strong>Trial registration: </strong>Not applicable.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"49"},"PeriodicalIF":3.0,"publicationDate":"2025-04-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11998222/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144058846","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}

{"title":"Third-party refusal of medical treatment - a critical analysis of case report from Islamic ethical perspectives.","authors":"Mohamad Iqhbal Bin Kunji Mohamad, Mohammad Naqib Hamdan, Aimi Nadia Mohd Yusof","doi":"10.1186/s12910-025-01209-1","DOIUrl":"https://doi.org/10.1186/s12910-025-01209-1","url":null,"abstract":"<p><strong>Background: </strong>Informed consent is a bedrock of ethical medical practice; however, scenarios in which a third party refuses life-saving treatment for an incapacitated patient present a unique and underexplored ethical quandary. Such conflicts are especially challenging when cultural or religious values influence decisions. In Muslim-majority contexts, healthcare practitioners often grapple with whether and how Islamic jurisprudence might justify overriding a guardian's refusal. While numerous case reports exist on patient-centred autonomy and consent, few specifically address the intersection of parental refusal, religious and ethical frameworks, and urgent clinical interventions. By examining this case and situating it within Islamic legal reasoning, we highlight a novel angle that offers healthcare providers religious insight and practical guidance.</p><p><strong>Case presentation: </strong>We present the case of an 18-year-old Muslim female with no prior significant medical history who arrived at the emergency department unconscious and in impending respiratory arrest. The clinical team recommended intubation to prevent critical deterioration. However, the patient's sole legal guardian-her mother-adamantly refused consent for endotracheal intubation and other potentially life-saving measures, including CPR, citing personal mistrust and past negative healthcare experiences. In response, the team adopted a less effective non-invasive ventilation strategy and pursued repeated discussions to understand the mother's rationale. Despite these efforts, the patient's trajectory only improved gradually without the recommended definitive intervention. The patient, once conscious, deferred decision-making entirely to her mother. Subsequent readmissions repeated this pattern of refusal and partial treatment acceptance. Ultimately, the patient recovered sufficiently for discharge, though underlying risk factors remained poorly addressed as she defaulted on her subsequent follow-up appointment.</p><p><strong>Conclusions: </strong>This case underscores the tension between guardian decisions, patient welfare, and religious-ethical principles. Our analysis reveals a principled basis for prioritising patient well-being over third-party refusal by examining Islamic jurisprudential rulings on consent. The insights from this case could inform more religio-culturally sensitive policies and strengthen clinical decision-making frameworks in contexts where religious norms significantly shape healthcare choices.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"48"},"PeriodicalIF":3.0,"publicationDate":"2025-04-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11993996/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144065272","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}

{"title":"The high-priority ethical issues of advanced paternal age: perspectives from a panel of experts in the fields of men reproduction and family building.","authors":"Vincent Couture, Émy Coiteux, Marianne Beaulieu, Timothey Bédard, Kévin Lavoie","doi":"10.1186/s12910-025-01202-8","DOIUrl":"https://doi.org/10.1186/s12910-025-01202-8","url":null,"abstract":"<p><strong>Background: </strong>Research shows that the age of fathers at the time of conception is correlated with detrimental effect for the health of the future offspring. This situation raises ethical questions regarding the priority of the principle of reproductive autonomy of men of advanced age over the well-being of their future offspring. This problem leads to other normative implications such as the value of introducing limits to the use of medically assisted reproduction, and the development of public health interventions. For the moment, this ethical reflection is mostly speculative and calls to open up the discussion. The aim of this research was to survey experts, working in related fields to the topic of advanced paternal age (APA), regarding the top priority ethical issues of this emerging subject.</p><p><strong>Methods: </strong>We recruited experts concerned by APA with backgrounds in health sciences, ethics, social work and reproductive medicine. We conducted a modified e-Delphi panel that lasted three rounds to build a consensual list of issues. The last round took the form of structured interviews exploring the results of the previous rounds.</p><p><strong>Results: </strong>The top four issues according to the panel are: (1) Should APA be included as a criterion for prenatal genetic screening? (2) Should we raise awareness on reproductive health in relation to the age of fathers? (3) How can health-care providers support patients in the context of APA? (4) How can research inform the public without stigmatizing fathers of advanced age?</p><p><strong>Conclusions: </strong>These exploratory results suggest that the issues of how to inform various audiences properly on APA are important concerns for experts.</p><p><strong>Clinical trial number: </strong>Not applicable.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"46"},"PeriodicalIF":3.0,"publicationDate":"2025-04-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11992766/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144006771","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}

{"title":"The research relationship: participant perspectives on consent in biobanking.","authors":"Rachel Thompson, Kate Lyle, Gabrielle Samuel, Jo Holliday, Fenella Starkey, Susan Wallace, Anneke Lucassen","doi":"10.1186/s12910-025-01199-0","DOIUrl":"https://doi.org/10.1186/s12910-025-01199-0","url":null,"abstract":"<p><strong>Background: </strong>This paper examines challenges associated with the governance of large-scale biobanks. As the collection and interrogation of population-scale data is increasingly positioned as a route to new understandings of health and disease, large-scale biobanks are becoming essential elements of research infrastructure. However, their longitudinal nature presents challenges for governance, particularly in relation to consent. Typically, participants agree to specific activities at recruitment, but evolving technologies make it difficult to anticipate future research applications at this time. Using a case study from UK Biobank, we demonstrate how trying to reconcile new research activities with old consent risks overlooking critical ethical issues -particularly how the proposed activity aligns with participants' understanding and expectation of biobank research.</p><p><strong>Methods: </strong>We conducted focus groups with UK Biobank participants using individual and group exercises to explore their views on consent and different types of research on their samples and data.</p><p><strong>Results: </strong>Our findings show that participants locate responsibility for research decisions with the biobank, rather than seeking control through their consent. They perceive their consent not as a one-off agreement but as the `opening act' for a research relationship with the biobank that can be continued through communication.</p><p><strong>Conclusions: </strong>Focussing on the ongoing research relationship -and the practices that sustain it- is more important than the specific wording on consent forms signed at recruitment. We argue this will be more effective in meeting participant expectation as well as supporting ethical research.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"47"},"PeriodicalIF":3.0,"publicationDate":"2025-04-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11992699/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144028129","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}

{"title":"How to deal with the criterion of severe mental distress for late termination of pregnancy? A scoping literature review and a content analysis of clinical ethics consultations.","authors":"Charlotte Wetterauer, Jan Schürmann, Laura Winkler, Anna Lisa Westermair, Nikola Biller-Andorno, Sibil Tschudin, Gwendolin Manegold-Brauer, Manuel Trachsel","doi":"10.1186/s12910-025-01207-3","DOIUrl":"https://doi.org/10.1186/s12910-025-01207-3","url":null,"abstract":"<p><strong>Background: </strong>The issue of late termination of pregnancy (abortion after a certain gestational age, depending on different definitions) is a topic of intense debate among healthcare professionals and the public, as it involves balancing the divergent interests and needs of the pregnant person and the foetus. Some jurisdictions recognize severe mental distress as a valid criterion for allowing late termination of pregnancy. However, the unavailability of a clear definition presents challenges in clinical practice.</p><p><strong>Methods: </strong>A scoping literature review was conducted to examine how the criterion of severe mental distress is operationalised in the context of late termination of pregnancy. In addition, we conducted a qualitative content analysis of clinical ethics consultation reports dealing with requests for late termination of pregnancy in a Swiss university hospital.</p><p><strong>Results: </strong>The scoping review of the literature yielded that 23 publications distributed worldwide were relevant to the question. Regarding the concept of severe mental distress, there is no uniform terminology. The indication for abortion is referred to as psychiatric, psychosocial, or sociomedical indication, or maternal emergency. Various criteria are mentioned that can contribute to categorising a condition as a severe mental crisis to varying degrees, including age, psychiatric illnesses, psychological conditions, foetal malformations, socio-economic conditions, or criminological circumstances. The qualitative content analysis of 20 clinical ethics consultation reports revealed a range of ethical challenges that arise in clinical practice, namely how the risk of severe mental distress can be assessed, whether the termination of pregnancy is suitable to avert the distress, and whether the termination of pregnancy is proportionate. We identified several recurring criteria that require clarification to aid decision making, such as whether treatment options and alternatives have been adequately discussed and presented, whether the request is consistent and enduring, and whether there are causes of severe mental distress that could be eliminated otherwise.</p><p><strong>Conclusions: </strong>For jurisdictions that allow late-term abortion based on severe mental distress, we propose a set of guiding questions to support healthcare professionals engaging in careful decision making.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"45"},"PeriodicalIF":3.0,"publicationDate":"2025-04-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11980131/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144042550","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}

{"title":"Between empowerment, patronization, and surveillance. A semi-structured interview study with persons with dementia and family caregivers on the empowering opportunities and perils of intelligent assistive technologies.","authors":"Clara Löbe, Niklas Petersen","doi":"10.1186/s12910-025-01203-7","DOIUrl":"10.1186/s12910-025-01203-7","url":null,"abstract":"<p><strong>Background: </strong>Intelligent assistive technology (IAT) can contribute to the empowerment of persons with dementia by increasing independence, strengthening social participation, and improving quality of life. IAT could, however, also create new dependencies, reinforce power asymmetries, perpetuate stigmatization, and invade the privacy of persons living with dementia. To fulfill the empowering promise of new technologies and design a user-friendly IAT, users'perspectives, needs, capabilities and interests should be incorporated into IAT development and implementation from an early stage. Yet, the development and ethical assessment of IAT still tends to neglect the perspectives of potential user groups. This study explores how persons with dementia and their caregivers assess the empowering potential, opportunities, and risks of IAT.</p><p><strong>Methods: </strong>We conducted a qualitative content analysis of 27 semi-structured interviews with persons with dementia (12) and their caregivers (15). Three technologies (GPS bracelet, dressing technology, and emotion recognition technology) were presented in the interviews using fictional case vignettes.</p><p><strong>Results: </strong>Persons with dementia and their caregivers generally believe that IAT can potentially empower persons with dementia by improving their independence in performing daily tasks, supporting their independent mobility, increasing their physical and emotional sense of safety, and improving their social participation. The risks they identify include violations of privacy, patronization through technology, lack of user specificity, and insufficient everyday usability. Technologies are viewed very differently depending on the context, purpose of use, and user group.</p><p><strong>Conclusion: </strong>IATs seem to have the potential to empower persons with dementia, but risks and benefits are perceived differently by the interviewees. The technology's usefulness depends on adapting to users' needs, capabilities, and interests. Future studies using a participatory approach that includes user preferences from the outset could lead to more user-centered technologies that promote the empowerment of persons with dementia.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"44"},"PeriodicalIF":3.0,"publicationDate":"2025-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11971744/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143788968","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}

{"title":"End of life care preferences in the Arab population in Israel- bridging the gap between unfounded assumptions and autonomous wishes.","authors":"Morad Sayid Ahmad, Maya Peled Raz","doi":"10.1186/s12910-025-01201-9","DOIUrl":"10.1186/s12910-025-01201-9","url":null,"abstract":"<p><strong>Introduction: </strong>End-of-life (EOL) decision-making involves complex ethical, cultural, and religious considerations, particularly within minority communities. In Israel, the Arab population, comprising approximately 21% of the country's population, remains underrepresented in EOL research. This study explores the EOL care preferences of elderly Arab individuals and their families, focusing on the interplay between cultural values, religious beliefs, and personal autonomy.</p><p><strong>Methods: </strong>A qualitative study was conducted using semi-structured interviews with 24 participants, including elderly individuals (aged 60+) and their family members. Participants were recruited through purposive and snowball sampling in community settings across northern Israel. Data were transcribed, translated, and thematically analyzed to identify key patterns in attitudes toward EOL care.</p><p><strong>Results: </strong>Findings reveal a strong preference among elderly Arab participants for a peaceful and dignified death at home rather than in a medicalized setting. Quality of life was prioritized over life-prolonging treatments, with religious beliefs playing a significant role in shaping perspectives. However, cultural taboos and generational differences hindered open communication within families. Many younger family members assumed their elders preferred life extension, while elderly participants often desired comfort-focused care. Additionally, a lack of awareness of advance care planning tools limited the ability of patients to formally express their preferences.</p><p><strong>Discussion: </strong>A major challenge identified in this study is the absence of open discussions about EOL preferences, driven by cultural taboos, emotional discomfort, and fear. Many participants avoided such conversations due to beliefs that discussing death invites misfortune or imposes an emotional burden on loved ones. Younger family members, in particular, hesitated to engage in these discussions, leading to decisions based on assumptions rather than explicit patient wishes. Encouraging structured, culturally sensitive conversations and increasing awareness of advance care planning could help ensure that patients' preferences are recognized and respected.</p><p><strong>Conclusions: </strong>Bridging the gap between assumptions and actual preferences requires culturally sensitive communication, increased awareness of advance care planning, and structured family discussions. These measures will ensure that EOL care respects both individual autonomy and cultural values, fostering a more inclusive and patient-centered healthcare approach.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"42"},"PeriodicalIF":3.0,"publicationDate":"2025-04-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11969688/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143788969","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}