BMC Medical Ethics

ISSN: 1472-6939

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  1.  1
    How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community.Josephine Borthwick, Natalia Evertsz & Bridget Pratt - 2023 - BMC Medical Ethics 24 (1):1-15.
    Background There is now rising consensus that community engagement is ethically and scientifically essential for all types of health research. Yet debate continues about the moral aims, methods and appropriate timing in the research cycle for community engagement to occur, and whether the answer should vary between different types of health research. Co-design and collaborative partnership approaches that involve engagement during priority-setting, for example, are common in many forms of applied health research but are not regular practice in biomedical research. (...)
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  2.  4
    Personal health monitoring in the armed forces – scouting the ethical dimension.Dave Bovens, Eva van Baarle & Bert Molewijk - 2023 - BMC Medical Ethics 24 (1):1-13.
    Background The field of personal health monitoring (PHM) develops rapidly in different contexts, including the armed forces. Understanding the ethical dimension of this type of monitoring is key to a morally responsible development, implementation and usage of PHM within the armed forces. Research on the ethics of PHM has primarily been carried out in civilian settings, while the ethical dimension of PHM in the armed forces remains understudied. Yet, PHM of military personnel by design takes place in a different setting (...)
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  3.  1
    Exploring what is reasonable: uncovering moral reasoning of vascular surgeons in daily practice.Anders Bremer, Marit Karlsson, Mia Svantesson & Kaja Heidenreich - 2023 - BMC Medical Ethics 24 (1):1-10.
    BackgroundVascular surgery offers a range of treatments to relieve pain and ulcerations, and to prevent sudden death by rupture of blood vessels. The surgical procedures involve risk of injury and harm, which increases with age and frailty leading to complex decision-making processes that raise ethical questions. However, how vascular surgeons negotiate these questions is scarcely studied. The aim was therefore to explore vascular surgeons’ moral reasoning of what ought to be done for the patient.MethodsQualitative, semi-structured interviews were conducted with 19 (...)
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  4. Clinical ethics consultation documentation in the era of open notes.Chad Childers, Jonathan Marron, Elaine C. Meyer & Gregory A. Abel - 2023 - BMC Medical Ethics 24 (1):1-6.
    Background In 2021, federal rules from the 21st Century Cures Act mandated most clinical notes be made available in real-time, online, and free of charge to patients, a practice often referred to as “open notes.” This legislation was passed to support medical information transparency and reinforce trust in the clinician-patient relationship; however, it created additional complexities in that relationship and raises questions of what should be included in notes intended to be read by both clinicians and patients. Main Body Even (...)
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  5. Equivalence of care, confidentiality, and professional independence must underpin the hospital care of individuals experiencing incarceration.Markus Eichelberger, Maria M. Wertli & Nguyen Toan Tran - 2023 - BMC Medical Ethics 24 (1):1-5.
    We present the reflections of three clinical practitioners on ethical considerations when caring for individuals experiencing incarceration needing in-patient hospital services. We examine the challenges and critical importance of adhering to core principles of medical ethics in such settings. These principles encompass access to a physician, equivalence of care, patient’s consent and confidentiality, preventive healthcare, humanitarian assistance, professional independence, and professional competence. We strongly believe that detained persons have a right to access healthcare services that are equivalent to those available (...)
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  6.  1
    Physician-reported characteristics, representations, and ethical justifications of shared decision-making practices in the care of paediatric patients with prolonged disorders of consciousness.Marta Fadda, Emiliano Albanese, Roberto Malacrida, Federica Merlo & Vinurshia Sellaiah - 2023 - BMC Medical Ethics 24 (1):1-13.
    BackgroundDespite consensus about the importance of implementing shared decision-making (SDM) in clinical practice, this ideal is inconsistently enacted today. Evidence shows that SDM practices differ in the degree of involvement of patients or family members, or in the amount of medical information disclosed to patients in order to “share” meaningfully in treatment decisions. Little is known on which representations and moral justifications physicians hold when realizing SDM. This study explored physicians’ experiences of SDM in the management of paediatric patients with (...)
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  7. Situational vulnerability within mental healthcare – a qualitative analysis of ethical challenges during the COVID-19 pandemic.Mirjam Faissner, Anna Werning, Michael Winkelkötter, Holger Foullois, Michael Löhr & Jakov Gather - 2023 - BMC Medical Ethics 24 (1):1-9.
    Background Mental healthcare users and patients were described as a particularly vulnerable group in the debate on the burdens of the COVID-19 pandemic. Just what this means and what normative conclusions can be derived from it depend to a large extent on the underlying concept of vulnerability. While a traditional understanding locates vulnerability in the characteristics of social groups, a situational and dynamic approach considers how social structures produce vulnerable social positions. The situation of users and patients in different psychosocial (...)
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  8.  7
    Mapping ethical issues in the use of smart home health technologies to care for older persons: a systematic review.Nadine Andrea Felber, Yi Jiao Tian, Félix Pageau, Bernice Simone Elger & Tenzin Wangmo - 2023 - BMC Medical Ethics 24 (1):1-13.
    Background The worldwide increase in older persons demands technological solutions to combat the shortage of caregiving and to enable aging in place. Smart home health technologies (SHHTs) are promoted and implemented as a possible solution from an economic and practical perspective. However, ethical considerations are equally important and need to be investigated. Methods We conducted a systematic review according to the PRISMA guidelines to investigate if and how ethical questions are discussed in the field of SHHTs in caregiving for older (...)
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  9.  7
    Japan should initiate the discussion on voluntary assisted dying legislation now.Miki Fukuyama, Masashi Tanaka, Yoko Shimakura, Taketoshi Okita & Atsushi Asai - 2023 - BMC Medical Ethics 24 (1):1-10.
    BackgroundNo laws or official guidelines govern voluntary assisted dying (VAD) in Japan. A legislative bill on the termination of life-sustaining measures has yet to be sent to deliberations for legislation, due to strong opposition that has prevented it from being submitted to the Diet. However, Japan has recently witnessed several cases involving VAD.Main textAgainst this backdrop, we argue that Japan should begin discussion on VAD legislation, referring to the Voluntary Assisted Dying Act 2017 (VADA2017), which was established in 2017 in (...)
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  10.  1
    Spanish psychometric properties of the moral distress scale—revised: a study in healthcare professionals treating COVID-19 patients.L. Galiana, C. Moreno-Mulet, A. Carrero-Planells, C. López-Deflory, P. García-Pazo, M. Nadal-Servera & N. Sansó - 2023 - BMC Medical Ethics 24 (1):1-12.
    Background Moral distress appears when a healthcare professional is not able to carry out actions in accordance with their professional ethical standards. The Moral Distress Scale-Revised is the most widely used to assess levels of moral distress, but it is not validated in Spanish. The aim of the study is to validate the Spanish version of the Moral Distress Scale – utilised within a sample of Spanish healthcare professionals treating COVID–19 patients. Methods The original (english) and the portuguese and french (...)
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  11.  3
    Project DECIDE, part II: decision-making places for people with dementia in Alzheimer’s disease: supporting advance decision-making by improving person-environment fit.Julia Haberstroh, Heiko Ullrich, Anna Theile-Schürholz, Irene Schmidtmann, Andreas Reif, Aoife Poth, David Prvulovic, Nathalie Pfeiffer, Frank Oswald, Tanja Müller, Gregor Lindl, Boris Knopf, Jonas Karneboge, Tarik Karakaya, Ingmar Hornke, Martin Grond, Daniel Garmann, Simon Forstmeier, Stefanie Baisch, Christina Abele & Janina Florack - 2023 - BMC Medical Ethics 24 (1):1-11.
    BackgroundThe UN Convention on the Rights of Persons with Disabilities, and the reformed guardianship law in Germany, require that persons with a disability, including people with dementia in Alzheimer’s disease (PwAD), are supported in making self-determined decisions. This support is achieved through communication. While content-related communication is a deficit of PwAD, relational aspects of communication are a resource. Research in supported decision-making (SDM) has investigated the effectiveness of different content-related support strategies for PwAD but has only succeeded in improving understanding, (...)
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  12.  5
    REPRESENT: REPresentativeness of RESearch data obtained through the ‘General Informed ConsENT’.Bernard Hirschel, Angela Huttner, Thomas Perneger, Christian Lovis, Caroline Samer, Sonia Carboni & Cristina Bosmani - 2023 - BMC Medical Ethics 24 (1):1-7.
    BackgroundWe assessed potential consent bias in a cohort of > 40,000 adult patients asked by mail after hospitalization to consent to the use of past, present and future clinical and biological data in an ongoing ‘general consent’ program at a large tertiary hospital in Switzerland.MethodsIn this retrospective cohort study, all adult patients hospitalized between April 2019 and March 2020 were invited to participate to the general consent program. Demographic and clinical characteristics were extracted from patients’ electronic health records (EHR). Data (...)
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  13.  6
    Biases in bioethics: a narrative review. [REVIEW]Bjørn Hofmann - 2023 - BMC Medical Ethics 24 (1):1-19.
    Given that biases can distort bioethics work, it has received surprisingly little and fragmented attention compared to in other fields of research. This article provides an overview of potentially relevant biases in bioethics, such as cognitive biases, affective biases, imperatives, and moral biases. Special attention is given to moral biases, which are discussed in terms of (1) Framings, (2) Moral theory bias, (3) Analysis bias, (4) Argumentation bias, and (5) Decision bias. While the overview is not exhaustive and the taxonomy (...)
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  14.  5
    Experience and perspectives of end-of-life care discussion and physician orders for life-sustaining treatment of Korea (POLST-K): a cross-sectional study.Su-Jin Koh, Jaekyung Cheon, Hyeyeoung Kim, Yoonki Hong, Sanghoon Han, Myung Ah Lee, Kyung Hee Lee, Byung Kyu Park, Jae Young Moon, Ju-Hee Kim, Jong Soo Lee, Shinmi Kim, Insook Lee & Hyeon-Su Im - 2023 - BMC Medical Ethics 24 (1):1-12.
    BackgroundThis study aimed to identify the healthcare providers’ experience and perspectives toward end-of-life care decisions focusing on end-of-life discussion and physician’s order of life-sustaining treatment documentation in Korea which are major parts of the Life-Sustaining Treatment Act.MethodsA cross-sectional survey was conducted using a questionnaire developed by the authors. A total of 474 subjects—94 attending physicians, 87 resident physicians, and 293 nurses—participated in the survey, and the data analysis was performed in terms of frequency, percentage, mean and standard deviation using the (...)
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  15.  27
    The conundrums of the reasonable patient standard in English medical law.Shing Fung Lee, Eric C. Ip & Kelvin Hiu Fai Kwok - 2023 - BMC Medical Ethics 24 (1):1-5.
    BackgroundIn its 2015 decision in Montgomery v. Lanarkshire Health Board, the Supreme Court of the United Kingdom overruled the long-standing, paternalistic prudent doctor standard of care in favour of a new reasonable patient standard which obligates doctors to make their patients aware of all material risks of the recommended treatment and of any reasonable alternative treatment. This landmark judgment has been of interest to the rest of the common law world. A judicial trend of invoking Montgomery to impose more stringent (...)
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  16.  3
    Citizen attitudes to non-treatment decision making: a Norwegian survey.Morten Magelssen, Reidar Pedersen, Morten Andreas Horn & David Wikstøl - 2023 - BMC Medical Ethics 24 (1):1-10.
    BackgroundDecisions about appropriate treatment at the end of life are common in modern healthcare. Non-treatment decisions (NTDs), comprising both withdrawal and withholding of (potentially) life-prolonging treatment are in principle accepted in Norway. However, in practice they may give rise to significant moral problems for health professionals, patients and next of kin. Here, patient values must be considered. It is relevant to study the moral views and intuitions of the general population on NTDs and special areas of contention such as the (...)
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  17.  6
    Two years of ethics reflection groups about coercion in psychiatry. Measuring variation within employees’ normative attitudes, user involvement and the handling of disagreement.Bert Molewijk, Reidar Pedersen, Almar Kok, Reidun Førde & Olaf Aasland - 2023 - BMC Medical Ethics 24 (1):1-19.
    Background Research on the impact of ethics reflection groups (ERG) (also called moral case deliberations (MCD)) is complex and scarce. Within a larger study, two years of ERG sessions have been used as an intervention to stimulate ethical reflection about the use of coercive measures. We studied changes in: employees’ attitudes regarding the use of coercion, team competence, user involvement, team cooperation and the handling of disagreement in teams. Methods We used panel data in a longitudinal design study to measure (...)
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  18.  9
    Key ethical issues encountered during COVID-19 research: a thematic analysis of perspectives from South African research ethics committees.Keymanthri Moodley, Stuart Rennie & Theresa Burgess - 2023 - BMC Medical Ethics 24 (1):1-13.
    BackgroundThe COVID-19 pandemic presents significant challenges to research ethics committees (RECs) in balancing urgency of review of COVID-19 research with careful consideration of risks and benefits. In the African context, RECs are further challenged by historical mistrust of research and potential impacts on COVID-19 related research participation, as well as the need to facilitate equitable access to effective treatments or vaccines for COVID-19. In South Africa, an absent National Health Research Ethics Council (NHREC) also left RECs without national guidance for (...)
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  19.  8
    Extremely premature birth bioethical decision-making supported by dialogics and pragmatism.Gregory P. Moore & Joseph W. Kaempf - 2023 - BMC Medical Ethics 24 (1):1-9.
    Moral values in healthcare range widely between interest groups and are principally subjective. Disagreements diminish dialogue and marginalize alternative viewpoints. Extremely premature births exemplify how discord becomes unproductive when conflicts of interest, cultural misunderstanding, constrained evidence review, and peculiar hierarchy compete without the balance of objective standards of reason. Accepting uncertainty, distributing risk fairly, and humbly acknowledging therapeutic limits are honorable traits, not relativism, and especially crucial in our world of constrained resources. We think dialogics engender a mutual understanding that: (...)
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  20.  11
    Informed or misinformed consent and use of modified texture diets in dysphagia.Siofra Mulkerrin, Alison Smith, Aoife Murray, Lindsey Collins, Arlene McCurtin, Tracy Lazenby-Paterson, Paula Leslie & Shaun T. O’Keeffe - 2023 - BMC Medical Ethics 24 (1):1-12.
    BackgroundUse of modified texture diets—thickening of liquids and modifying the texture of foods—in the hope of preventing aspiration, pneumonia and choking, has become central to the current management of dysphagia. The effectiveness of this intervention has been questioned. We examine requirements for a valid informed consent process for this approach and whether the need for informed consent for this treatment is always understood or applied by practitioners.Main textValid informed consent requires provision of accurate and balanced information, and that agreement is (...)
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  21. Transparency of clinical practice guideline funding: a cross-sectional analysis of the German AWMF registry.Hendrik Napierala, Angela Schuster, Sabine Gehrke-Beck & Christoph Heintze - 2023 - BMC Medical Ethics 24 (1):1-8.
    Background While reporting of individual conflicts of interest is formalised, it is unclear to what extent the funding of clinical practice guidelines (CPGs) is formally reported. The aim of this study is to explore the accuracy and comprehensiveness of reporting on funding in German CPGs. Methods We searched for CPGs in the registry of the Association of the Scientific Medical Societies in Germany in July 2020. Information on guideline funding was categorised by two reviewers independently and discrepancies were clarified by (...)
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  22.  5
    Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences.Kajsa Norbäck, Anna T. Höglund, Tove Godskesen & Sara Frygner-Holm - 2023 - BMC Medical Ethics 24 (1):1-13.
    Background Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context. Another aim was to explore their perceptions of research ethics competence in recruiting children for research. Methods An explorative qualitative (...)
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  23.  6
    Improving oncology first-in-human and Window of opportunity informed consent forms through participant feedback.Rebecca D. Pentz, R. Donald Harvey, Margie Dixon, Shannon Blee, Tekiah McClary, John Bourgeois, Eli Abernethy, Gavin Campbell, Hannah Claire Sibold & Anna M. Avinger - 2023 - BMC Medical Ethics 24 (1):1-7.
    BackgroundAlthough patient advocates have developed templates for standard consent forms, evaluating patient preferences for first in human (FIH) and window of opportunity (Window) trial consent forms is critical due to their unique risks. FIH trials are the initial use of a novel compound in study participants. In contrast, Window trials give an investigational agent over a fixed duration to treatment naïve patients in the time between diagnosis and standard of care (SOC) surgery. Our goal was to determine the patient-preferred presentation (...)
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  24.  4
    Emergency separation of conjoined twins in a tertiary hospital in Indonesia: three case reports.Andi Ade Wijaya Ramlan, Raihanita Zahra, Kshetra Rinaldhy, Christopher Kapuangan, Rahendra, Komang Ayu Ferdiana & Ahmad Yani - 2023 - BMC Medical Ethics 24 (1):1-7.
    BackgroundEmergency separation of conjoined twins is performed when one twin is already dead or dying and threatens the survival of the other. The particular decision to perform an emergency separation of conjoined twins provides an ethical dilemma that needs special attention. Adding to the complexity of surgical and postsurgical management in emergency separation, ethical and sociocultural aspects further complicate decision-making.Case presentationFrom 1987 to 2022, 18 conjoined twin separations were performed in our centre. This paper describes three conjoined twin emergency separations. (...)
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  25.  5
    Stakeholder views on informed consent models for future use of biological samples in Malawi and South Africa.Stuart Rennie, Walter Jaoko & Francis Masiye - 2023 - BMC Medical Ethics 24 (1):1-10.
    BackgroundCurrent advances in biomedical research have introduced new ethical challenges in obtaining informed consent in low and middle-income settings. For example, there are controversies about the use of broad consent in the collection of biological samples for use in future biomedical research. However, few studies have explored preferred informed consent models for future use of biological samples in Malawi and South Africa. Therefore, we conducted an empirical study to understand preferred consent models among key stakeholders in biomedical studies that involve (...)
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  26.  5
    ‘Guidance should have been there 15 years ago’ research stakeholders’ perspectives on ancillary care in the global south: a case study of Malawi.Janet Seeley, Nicola Desmond, Deborah Nyirenda & Blessings M. Kapumba - 2023 - BMC Medical Ethics 24 (1):1-18.
    BackgroundMedical researchers in resource-constrained settings must make difficult moral decisions about the provision of ancillary care to participants where additional healthcare needs fall outside the scope of the research and are not provided for by the local healthcare system. We examined research stakeholder perceptions and experiences of ancillary care in biomedical research projects in Malawi. MethodsWe conducted 45 qualitative in-depth interviews with key research stakeholders: researchers, health officials, research ethics committee members, research participants and grants officers from international research funding (...)
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  27.  7
    Severity as a moral qualifier of malady.Carl Tollef Solberg, Mathias Barra, Lars Sandman & Bjørn Hoffmann - 2023 - BMC Medical Ethics 24 (1):1-7.
    The overarching aim of this article is to scrutinize how severity can work as a qualifier for the moral impetus of malady. While there is agreement that malady is of negative value, there is disagreement about precisely how this is so. Nevertheless, alleviating disease, injury, and associated suffering is almost universally considered good. Furthermore, the strength of a diseased person’s moral claims for our attention and efforts will inevitably vary. This article starts by reflecting on what kind of moral impetus (...)
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  28.  6
    Empirical studies on how ethical recommendations are translated into practice: a cross-section study on scope and study objectives.Daniel Strech, Holger Langhof & Johannes Schwietering - 2023 - BMC Medical Ethics 24 (1):1-8.
    BackgroundEmpirical research can become relevant for bioethics in at least two ways. First, by informing the development or refinement of ethical recommendations. Second, by evaluating how ethical recommendations are translated into practice. This study aims to investigate the scope and objectives of empirical studies evaluating how ethical recommendations are translated into practice. MethodsA sample of the latest 400 publications from four bioethics journals was created and screened. All publications were included if they met one of the following three criteria: (1) (...)
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  29.  1
    Medical staff’s sense of awareness of informed consent for adolescent cancer patients and the need for decision-making support practiced from the perspective of trauma-informed approach.Kyoko Tanaka, Maoko Hayakawa, Makiko Mori, Naoko Maeda, Masako Nagata & Keizo Horibe - 2023 - BMC Medical Ethics 24 (1):1-9.
    It has not been established how to assess children’s and adolescents’ decision-making capacity (DMC) and there has been little discussion on the way their decision-making (DM). The purpose of this study was to examine actual situation and factors related to difficulties in explaining their disease to adolescent cancer patients or obtaining informed consent (IC). The cross-sectional questionnaire survey was conducted. Physicians who have been treating adolescent cancer patients for at least five years answered a self-administered questionnaire uniquely developed about clinical (...)
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  30.  5
    Fragmented understanding: exploring the practice and meaning of informed consent in clinical trials in Ho Chi Minh City, Vietnam.Jennifer Ilo Van Nuil, Evelyne Kestelyn, Susan Bull, Phu Hoan Nguyen, Phuong Thanh Le, Ngoc Bao Hong Lam, Thuan Trong Dang & Yen Hong Thi Nguyen - 2023 - BMC Medical Ethics 24 (1):1-13.
    BackgroundThe informed consent process in clinical trials has been extensively studied to inform the development processes which protect research participants and encourage their autonomy. However, ensuring a meaningful informed consent process is still of great concern in many research settings due to its complexity in practice and interwined socio-cultural factors.ObjectivesThis study explored the practices and meaning of the informed consent process in two clinial trials conducted by Oxford University Clinical Research Unit in collaboration with the Hospital for Tropical Diseases in (...)
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  31.  5
    Patients acceptance and comprehension to written and verbal consent (PAC–VC).Robert C. Welsh, Shane Kimber, Justin Ezekowitz & Rabia Kashur - 2023 - BMC Medical Ethics 24 (1):1-9.
    BackgroundAcute myocardial infarction (AMI) research is challenging as it requires enrollment of acutely ill patients. Patients are generally in a suboptimal state for providing informed consent. Patients’ understanding to verbal assents have not been previously examined in AMI research. Patients Acceptance and Comprehension to Written and Verbal Consent (PAC–VC) compared patients’ understanding and attitudes to verbal and written consents in AMI RCTs.MethodsPAC–VC recruited patients from 3 AMI trials using both verbal N = 12 and written N = 6 consents. We (...)
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  32.  7
    The impact on patients of objections by institutions to assisted dying: a qualitative study of family caregivers’ perceptions.Ben P. White, Ruthie Jeanneret, Eliana Close & Lindy Willmott - 2023 - BMC Medical Ethics 24 (1):1-12.
    Background Voluntary assisted dying became lawful in Victoria, the first Australian state to permit this practice, in 2019 via the Voluntary Assisted Dying Act 2017 (Vic). While conscientious objection by individual health professionals is protected by the Victorian legislation, objections by institutions are governed by policy. No research has been conducted in Victoria, and very little research conducted internationally, on how institutional objection is experienced by patients seeking assisted dying. Methods 28 semi-structured interviews were conducted with 32 family caregivers and (...)
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