BMC Medical Ethics最新文献

{"title":"Ethical concerns in caring for persons with anorexia nervosa: content analysis of a series of documentations from ethics consultations.","authors":"Anna Lisa Westermair, Stella Reiter-Theil, Sebastian Wäscher, Manuel Trachsel","doi":"10.1186/s12910-024-01101-4","DOIUrl":"10.1186/s12910-024-01101-4","url":null,"abstract":"<p><strong>Background: </strong>Caring for patients with anorexia nervosa (AN) is associated with high levels of moral distress among healthcare professionals. The main moral conflict has been posited to be between applying coercion to prevent serious complications such as premature death and accepting treatment refusals. However, empirical evidence on this topic is scarce.</p><p><strong>Methods: </strong>We identified all 19 documentations of ethics consultations (ECs) in the context of AN from one clinical ethics support service in Switzerland. These documentations were coded with a sequential deductive-inductive approach and the code system was interpreted in a case-based manner. Here, we present findings on patient characteristics and ethical concerns.</p><p><strong>Findings: </strong>The ECs typically concerned an intensely pretreated, extremely underweight AN patient endangering herself by refusing the proposed treatment. In addition to the justifiability of coercion, frequent ethical concerns were whether further coerced treatment aimed at weight gain would be ineffective or even harmful, evidencing uncertainty about beneficence and non-maleficence and a conflict between these principles. Discussed options included harm reduction (e.g. psychotherapy without weight gain requirements) and palliation (e.g. initiating end-of-life care), the appropriateness of which were ethical concerns in themselves. Overall, nine different types of conflicts between or uncertainties regarding ethical principles were identified with a median of eight per case.</p><p><strong>Conclusions: </strong>Ethical concerns in caring for persons with AN are diverse and complex. To deal with uncertainty about and conflict between respect for autonomy, beneficence and non-maleficence, healthcare professionals consider non-curative approaches. However, currently, uncertainty around general justifiability, eligibility criteria, and concrete protocols hinders their adoption.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"102"},"PeriodicalIF":3.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11443878/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142360679","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Moral distress and protective work environment for healthcare workers during public health emergencies.","authors":"K Bondjers, Alve K Glad, H Wøien, T Wentzel-Larsen, D Atar, S K Reitan, L A Rosseland, J A Zwart, G Dyb, S Ø Stensland","doi":"10.1186/s12910-024-01098-w","DOIUrl":"10.1186/s12910-024-01098-w","url":null,"abstract":"<p><strong>Background: </strong>Public health emergencies, such as the Covid-19 pandemic, put great pressure on healthcare workers (HCW) across the world, possibly increasing the risk of experiencing ethically challenging situations (ECS). Whereas experiencing ECS as a HCW in such situations is likely unavoidable, mitigation of their adverse effects (e.g., moral distress) is necessary to reduce the risk of long-term negative consequences. One possible route of mitigation of these effects is via work environmental factors.</p><p><strong>Objectives: </strong>The current study aimed to examine: [1] risk factors associated with ECS among HCW [2], intensity of moral distress associated with ECS across various occupational factors (i.e., profession, degree of exposure to patients with Covid-19), and [3] the impact of work environmental factors on this association, in a sample of HCW during the pandemic.</p><p><strong>Methods: </strong>We employed multiple logistic and linear regression to self-report data from 977 HCWs at four Norwegian hospitals responding to a survey at the fourth wave of the pandemic.</p><p><strong>Results: </strong>About half of HCW in this study had experienced ECS during the pandemic, and levels of moral distress associated with such were higher than in previous studies using similar assessment methods. Younger age, female sex, geographical work area (mid-north of Norway), and profession (nurse) were all associated with higher odds (range of OR: 1.30-2.59) of experiencing ECS, as were direct contact with patients with Covid-19. Among those participants who reported that they had experienced ECS during the pandemic, moral distress levels when recalling those situations were moderate (Mean 5.7 on a 0-10 scale). Men reported somewhat lower intensity of moral distress (partial eta squared; ηp² = 0.02). Reporting a manageable workload (ηp² = 0.02), and greater opportunity to work according to best practice (ηp² = 0.02), were associated with lower levels of moral distress.</p><p><strong>Conclusions: </strong>Our findings suggest that moral distress could potentially be mitigated on an organizational level, particularly by focusing on ensuring a manageable workload, and an ability to work according to best practice. To build sustainable healthcare systems robust enough to withstand future public health emergencies, healthcare organizations should implement measures to facilitate these aspects of HCWs' work environment.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"103"},"PeriodicalIF":3.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11443852/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142360680","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The ethical requirement of explainability for AI-DSS in healthcare: a systematic review of reasons.","authors":"Nils Freyer, Dominik Groß, Myriam Lipprandt","doi":"10.1186/s12910-024-01103-2","DOIUrl":"10.1186/s12910-024-01103-2","url":null,"abstract":"<p><strong>Background: </strong>Despite continuous performance improvements, especially in clinical contexts, a major challenge of Artificial Intelligence based Decision Support Systems (AI-DSS) remains their degree of epistemic opacity. The conditions of and the solutions for the justified use of the occasionally unexplainable technology in healthcare are an active field of research. In March 2024, the European Union agreed upon the Artificial Intelligence Act (AIA), requiring medical AI-DSS to be ad-hoc explainable or to use post-hoc explainability methods. The ethical debate does not seem to settle on this requirement yet. This systematic review aims to outline and categorize the positions and arguments in the ethical debate.</p><p><strong>Methods: </strong>We conducted a literature search on PubMed, BASE, and Scopus for English-speaking scientific peer-reviewed publications from 2016 to 2024. The inclusion criterion was to give explicit requirements of explainability for AI-DSS in healthcare and reason for it. Non-domain-specific documents, as well as surveys, reviews, and meta-analyses were excluded. The ethical requirements for explainability outlined in the documents were qualitatively analyzed with respect to arguments for the requirement of explainability and the required level of explainability.</p><p><strong>Results: </strong>The literature search resulted in 1662 documents; 44 documents were included in the review after eligibility screening of the remaining full texts. Our analysis showed that 17 records argue in favor of the requirement of explainable AI methods (xAI) or ad-hoc explainable models, providing 9 categories of arguments. The other 27 records argued against a general requirement, providing 11 categories of arguments. Also, we found that 14 works advocate the need for context-dependent levels of explainability, as opposed to 30 documents, arguing for context-independent, absolute standards.</p><p><strong>Conclusions: </strong>The systematic review of reasons shows no clear agreement on the requirement of post-hoc explainability methods or ad-hoc explainable models for AI-DSS in healthcare. The arguments found in the debate were referenced and responded to from different perspectives, demonstrating an interactive discourse. Policymakers and researchers should watch the development of the debate closely. Conversely, ethicists should be well informed by empirical and technical research, given the frequency of advancements in the field.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"104"},"PeriodicalIF":3.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11443763/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142360681","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Researchers experience and views on participants' comprehension of informed consent in clinical trials in Malawi: a descriptive qualitative study.","authors":"Dorothy Maxwell Kazembe, Yimtubezinash Woldeamanuel, Solomon Mequanente Abay","doi":"10.1186/s12910-024-01100-5","DOIUrl":"10.1186/s12910-024-01100-5","url":null,"abstract":"<p><strong>Background: </strong>Informed consent is the cornerstone of research ethics. One of its goals is that participants enter research with an understanding of what their participation entails. This paper is a study on how researchers understand the informed consent process. Previous studies have looked at this topic from a research participant perspective. However, few studies focus on the perspectives of the researchers. Therefore, this is an important paper that highlights an important issue (informed consent) from the perspective of those who administer it during research.</p><p><strong>Methods: </strong>In-depth interviews were conducted with 18 researchers from 3 different research centers in Malawi working in clinical trials. The data was analyzed using open code utilizing the thematic approach to qualitative data.</p><p><strong>Results: </strong>This study identified that researchers have good awareness of the role of informed consent, how important it is for participants to understand the given information and ways to adjust their practice accordingly when obtaining it in order to enhance participant understanding. According to the research staff, most participants do not really understand all the concepts of the study at the initial visit, they gain more understanding during subsequent visits. It was emphasized that the best method of facilitating informed consent is reading the informed consent to the participant, thus a face-to-face conversation. Long and complex informed consent was identified as one of the barriers to participant understanding of the informed consent. Shortening the informed consent form and having additional conversation with the participants was suggested as one way of improving participant comprehension.</p><p><strong>Conclusion: </strong>Most of the participants understand much of the information during subsequent visits as you keep reminding them since informed consent is an ongoing process. Existing relationship or trust between a participant and a researcher, may influence participants' decision and misguide their understanding on the purpose of the study. Adequate time should be allocated to informed consent discussions. Shortening the informed consent forms and having additional conversations with potential participants may help improve their understanding.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"101"},"PeriodicalIF":3.0,"publicationDate":"2024-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11438391/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142332786","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Biobanking, digital health and privacy: the choices of 1410 volunteers and neurological patients regarding limitations on use of data and biological samples, return of results and sharing.","authors":"Emilia Giannella, Josep Miquel Bauça, Simona Gabriella Di Santo, Stefano Brunelli, Elisabetta Costa, Sergio Di Fonzo, Francesca Romana Fusco, Antonio Perre, Valerio Pisani, Giorgia Presicce, Francesca Spanedda, Giorgio Scivoletto, Rita Formisano, Maria Grazia Grasso, Stefano Paolucci, Domenico De Angelis, Giulia Sancesario","doi":"10.1186/s12910-024-01102-3","DOIUrl":"10.1186/s12910-024-01102-3","url":null,"abstract":"<p><strong>Background: </strong>The growing diffusion of artificial intelligence, data science and digital health has highlighted the role of collection of data and biological samples, thus raising legal and ethical concerns regarding its use and dissemination. Further, the expansion of biobanking, from the basic collection of frozen specimens to the virtual biobanks of specimens and associated data that exist today, has given a revolutionary potential on healthcare systems, particularly in the field of neurological diseases, due to the inaccessibility of central nervous system and the need of non-invasive investigation approaches. Informed Consent (IC) is considered mandatory in all research studies and specimen collections, and must specifically take into account the ethical respect to the individuals to whom the used biological material and data belong.</p><p><strong>Methods: </strong>We evaluated the attitudes of patients with neurological diseases (NP) and healthy volunteers (HV) towards the donation of biological samples to a biobank for future research studies on neurological diseases, and limitations on the use of data, related to the requirements set by the General Data Protection Regulation (GDPR). The study involved a total of 1454 subjects, including 502 HVs and 952 NPs, recruited at Santa Lucia Foundation IRCCS, Rome, from 2020 to 2024.</p><p><strong>Results: </strong>We found that (i) almost all subjects agreed with the participation in biobanking (ii) and authorization to genetic studies (HV = 99.1%; NP = 98.3%); Regarding the return of results, (iii) we found a statistically significant difference between NP and HV, the latter preferring not to be informed of potential results (HV = 43%; NP = 11.3%; p < 0.0001); (iv) a small number limited the sharing inside European Union (EU) (HV = 4.6%; NP = 6.6%), whereas patients were more likely to refuse transfer outside EU (HV = 7.4%; NP = 10.7% p = 0.05); (v) nearly all patients agreed with the use of additional health data from EMR for research purposes (98.9%).</p><p><strong>Conclusions: </strong>Consent for the donation of material for research purposes is crucial for biobanking and biomedical research studies that use biological material of human origin. Here, we have shown that choices regarding participation in a neurological biobank can be different between HVs and NPs, even if the benefit for research and scientific progress is recognized. NP have a strong interest in being informed of possible results but limit sharing of samples, highlighting a perception of greater individual or relative benefit, while HV prefer a wide dissemination and sharing of data but not to have the return of the results, favoring a possible benefit for society and knowledge. The results underline the need to carefully manage biological material and data collected in biobanks, in compliance with the GDPR and the specific requests of donors.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"100"},"PeriodicalIF":3.0,"publicationDate":"2024-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11437646/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142332785","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Correction: For, against, and beyond: healthcare professionals' positions on medical assistance in dying in Spain.","authors":"Iris Parra Jounou, Rosana Triviño-Caballero, Maite Cruz-Piqueras","doi":"10.1186/s12910-024-01097-x","DOIUrl":"10.1186/s12910-024-01097-x","url":null,"abstract":"","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"99"},"PeriodicalIF":3.0,"publicationDate":"2024-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11418186/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142301492","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"What do suicide loss survivors think of physician-assisted suicide: a comparative analysis of suicide loss survivors and the general population in Germany","authors":"Laura Hofmann, Louisa Spieß, Birgit Wagner","doi":"10.1186/s12910-024-01099-9","DOIUrl":"https://doi.org/10.1186/s12910-024-01099-9","url":null,"abstract":"Physician-assisted suicide (PAS) and voluntary euthanasia remain highly debated topics in society, drawing attention due to their ethical, legal, and emotional complexities. Within this debate, the loss of a loved one through suicide may shape the attitudes of survivors, resulting in more or less favorable attitudes towards this topic. This study aims to explore and compare the attitudes towards PAS and voluntary euthanasia in a population of suicide loss survivors and the general population, while also considering socio-demographic factors. A total of 529 participants, 168 of whom were survivors of suicide loss, completed an online questionnaire on their attitudes (NOBAS) and opinions (open response format) towards PAS and voluntary euthanasia, as well as regarding their legalization in Germany. The analysis consisted of both quantitative and qualitative components. The entire sample showed positive attitudes towards PAS and voluntary euthanasia in terminally ill persons. Participants were more divided in their attitudes towards PAS in the case of a mental health disorder. Individuals without experienced suicide loss were more liberal regarding legalization in Germany and were more likely to understand the wish for PAS. Survivors of suicide loss were mainly concerned about the consequences for relatives. However, differences between both groups are small. The experience of a loss by suicide influences attitudes towards PAS and voluntary euthanasia. Both groups showed an accepting attitude towards PAS and voluntary euthanasia, but also expressed concerns and fears regarding easy accessibility and consequences for grieving relatives.","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"48 1","pages":""},"PeriodicalIF":2.7,"publicationDate":"2024-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142255765","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Assessment of decision-making autonomy in chronic pain patients: a pilot study","authors":"Marguerite d’Ussel, Emmanuelle Sacco, Nathan Moreau, Julien Nizard, Guillaume Durand","doi":"10.1186/s12910-024-01096-y","DOIUrl":"https://doi.org/10.1186/s12910-024-01096-y","url":null,"abstract":"Patient decision-making autonomy refers to the patients’ ability to freely exert their own choices and make their own decisions, given sufficient resources and information to do so. In pain medicine, it is accepted that appropriate beneficial management aims to propose an individualized treatment plan shared with the patients, as agents, to help them live as autonomously as possible with their pain. However, are patients in chronic pain centers sufficiently autonomous to participate in the therapeutic decisions that concern them? As this question still remains unanswered, a pilot study was set up to that aim. Over a 2-month period, first-time patients within a tertiary multidisciplinary pain center underwent a systematic evaluation of their autonomy using the MacArthur Competence Assessment Tool for Treatment (MacCAT-T), considered the benchmark tool for measuring a patient’s ability to consent to treatment. Demographic data and pain characteristics of the patients were collected and their respective attending pain physicians were asked to clinically assess their patients’ degree of autonomy. Another physician, who had not participated in the initial patient evaluation, subsequently administered the MacCAT-T questionnaire to the same patients. Twenty-seven patients were included during the study period (21 women and 6 men), with an average age of 50 years. The average duration of pain was 8 years. Based on their clinical experience, the 4 different pain physicians in charge of these patients considered that out of 25 assessed patients, 22 of them (89%) had full decision-making capacity, with no deficit in autonomy. According to the MacCAT-T results, only 13 of these 25 patients (48%) had no deficit, while 7 (26%) had a major deficit in autonomy. The only patient characteristic that appeared to be related to autonomy was pain type, specifically nociplastic pain. The average time taken to complete the test was 20 min, and patients were very satisfied with the interview. Results from the present pilot study suggest that patients suffering from chronic pain do not appear to be entirely autonomous in their decision to consent to the proposed treatment plan according to the MacCAT-T questionnaire, and physicians seem to find it difficult to properly assess this competence in a clinical setting. Further studies with larger samples are needed to better evaluate this concept to improve the complex management of these patients.","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"29 1","pages":""},"PeriodicalIF":2.7,"publicationDate":"2024-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142255766","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"From ontological to relational: A scoping review of conceptions of dignity invoked in deliberations on medically assisted death","authors":"Isabelle Martineau, Naïma Hamrouni, Johanne Hébert","doi":"10.1186/s12910-024-01095-z","DOIUrl":"https://doi.org/10.1186/s12910-024-01095-z","url":null,"abstract":"Dignity is omnipresent in Western ethics, but it also provokes dissension and controversy. One of the most striking examples is the debate on medically assisted death, where dignity is invoked to support antagonistic positions. While some authors conclude that the concept is useless as an ethical reference, many others invite us to deepen our analysis from a multidimensional perspective, to enrich it and make it useful. This scoping study is intended to provide an overview of the different conceptions of dignity used in the assisted dying debate, to better grasp the multiple facets of the concept. The Joanna Briggs Institute's JBI Manual for Evidence Synthesis guided the scoping review. Key words were based on the researchers' expertise and were used to identify relevant literature in French and English. Eleven databases covering the last six decades were consulted. Initially, 2,071 references were found in the databases. After excluding duplicates, screening titles, abstracts, and full texts, and after a specific literature search on the concept of relational dignity, 156 papers were found to match the identified inclusion criteria. The literature highlights the stark confrontation between two dominant conceptions of dignity: ontological and autonomist. However, a lesser-known conceptualization of dignity integrates these two perspectives, underlining the relational and social dimensions of dignity. As a result, dignity emerges as a dynamic, experiential, and dialogical concept, that modulates itself according to circumstances. This raises the possibility of breaking through the binary debate and questioning the current frameworks that define dignity. This multidimensional conceptualization of dignity could lead to a more complete and nuanced understanding of the concept, as well as open richer normative horizons regarding the issue of medically assisted death.","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"15 1","pages":""},"PeriodicalIF":2.7,"publicationDate":"2024-09-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142191055","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Putting patients first: when home-based care staff prioritise loyalty to patients above the system and themselves. An ethnographic study","authors":"Cecilie Knagenhjelm Hertzberg, Morten Magelssen, Anne Kari Tolo Heggestad","doi":"10.1186/s12910-024-01094-0","DOIUrl":"https://doi.org/10.1186/s12910-024-01094-0","url":null,"abstract":"The growing number of older people worldwide poses challenges for health policy, particularly in the Global North, where policymakers increasingly expect seniors to live and receive care at home. However, healthcare professionals, particularly in home-based care, face dilemmas between adhering to care ideals and meeting external demands. Although they strive to uphold ethical care standards, they must deal with patients’ needs, cooperation with colleagues and management guidelines. Home-based care is an essential part of healthcare services in Norway, but staff struggle with high patient numbers and time management. This article focuses on how staff deal with ethical challenges related to contextual and organisational constraints. An ethnographic fieldwork in three municipalities in South-East Norway. The first author conducted three to four months of participant observation in each municipality. In addition, she conducted in-depth interviews with key informants in two municipalities and a focus group interview with seven home-based care workers in one municipality. The data was analysed by using a reflexive thematic analysis. Staff in home-based care are frequently more loyal to the patient than to the system and to their own needs. To provide good care, all informants disregarded the patient’s formal decision, i.e. they provided more care than the formalised decision stipulated. To prioritise beneficence to patients, informants also disregarded some of the rules applicable in home-based care. In addition, staff accepted risks to their own safety and health to provide care in the patient’s home. The loyalty of home-based care staff to their patients can go beyond their loyalty to the rules of the system and even their own safety. This commitment might be attributed to a sense of doing meaningful work, to providing relationship-based and individualised care, and to strong moral courage. However, the staff’s emphasis on flexibility and individualised care also brings challenges related to unclear boundaries related to patient care.","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"60 1","pages":""},"PeriodicalIF":2.7,"publicationDate":"2024-09-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142224819","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}