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BMC Medical Ethics is an open access journal publishing original peer-reviewed research articles in relation to medical ethics, heathcare and bioethics.
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The Globethics library contains articles of BMC International Health and Human Rights as of vol. 1(2000) to current.
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Transparency of clinical practice guideline funding: a cross-sectional analysis of the German AWMF registryAbstract 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 discussion with a third reviewer. Accuracy and comprehensiveness of reporting on funding was assessed using the German Instrument for Methodological Guideline Appraisal (DELBI). Results We included 507 CPGs published between 2015 and 2020 in the main analysis. 23/507 (4.5%) of the CPGs achieved the highest DELBI score by including information on funding sources, expenses and the amount of funding provided, as well as a statement on the independence of the guideline authors from the funding institution(s). CPGs with more rigorous methodological requirements (systematic review of the literature and/or structured consensus-building) received higher DELBI scores. Conclusion German CPGs do not communicate their funding transparently. Transparency of CPG funding could be achieved by making it mandatory to publish information for all guidelines. For that purpose, a standardised form and guidance should be developed.
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Situational vulnerability within mental healthcare – a qualitative analysis of ethical challenges during the COVID-19 pandemicAbstract 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 settings during the COVID-19 pandemic has not yet been comprehensively considered and ethically analyzed under the aspect of situational vulnerability. Methods We present the results of a retrospective qualitative analysis of a survey of ethical challenges in different mental healthcare facilities of a large regional mental healthcare provider in Germany. We evaluate them ethically using a dynamic and situational understanding of vulnerability. Results Difficulties in implementing infection prevention measures, restrictions of mental health services in favor of infection prevention, social isolation, negative health effects on mental healthcare users and patients, and challenges in implementing regulations on state and provider levels within the local specificities emerged across different mental healthcare settings as ethically salient topics. Conclusions Applying a situational and dynamic understanding of vulnerability allows the identification of specific factors and conditions that have contributed to an increased context-dependent vulnerability for mental healthcare users and patients. These factors and conditions should be considered on the level of state and local regulations to reduce and address vulnerability.
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Two years of ethics reflection groups about coercion in psychiatry. Measuring variation within employees’ normative attitudes, user involvement and the handling of disagreementAbstract 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 variation in survey scores from multidisciplinary employees from seven departments within three Norwegian mental health care institutions at three time points (T0–T1–T2). Mixed models were used to account for dependence of data in persons who participated more than once. Results In total, 1068 surveys (from 817 employees who did and did not participate in ERG) were included in the analyses. Of these, 7.6% (N = 62) responded at three points in time, 15.5% (N = 127) at two points, and 76.8% (N = 628) once. On average, over time, respondents who participated in ERG viewed coercion more strongly as offending (p < 0.05). Those who presented a case in the ERG sessions showed lower scores on User Involvement (p < 0.001), Team Cooperation (p < 0.01) and Constructive Disagreement (p < 0.01). We observed significant differences in outcomes between individuals from different departments, as well as between different professions. Initial significant changes due to frequency of participation in ERG and case presentation in ERG did not remain statistically significant after adjustment for Departments and Professions. Differences were generally small in absolute terms, possibly due to the low amount of longitudinal data. Conclusions This study measured specific intervention-related outcome parameters for describing the impact of clinical ethics support (CES). Structural implementation of ERGs or MCDs seems to contribute to employees reporting a more critical attitude towards coercion. Ethics support is a complex intervention and studying changes over time is complex in itself. Several recommendations for strengthening the outcomes of future CES evaluation studies are discussed. CES evaluation studies are important, since—despite the intrinsic value of participating in ERG or MCD—CES inherently aims, and should aim, at improving clinical practices.
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Spanish psychometric properties of the moral distress scale—revised: a study in healthcare professionals treating COVID-19 patientsAbstract 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 versions of the scale were translated into spanish by native or bilingual researchers and reviewed by an academic expert in ethics and moral philosophy as well as by a clinical expert. Research design: Descriptive cross-sectional study carried out using a self-reporting online survey. The data was collected between June- November 2020. A total of 661 professionals responded to the survey (N = 2873). Participants: healthcare professionals with more than two weeks of experience treating COVID–19 patients at the end of their life and working in the public sector of the Balearic Islands Health Service (Spain). Analyses included descriptive statistics, competitive confirmatory factor analysis, evidence on criterion-related validity and estimates of reliability. The study was approved by the Research Ethics Committee at the University of Balearic Islands. Results An unidimensional model in which a general factor of moral distress explained by 11 items of the Spanish version of the MDS–R scale was an adequate representation of the data: χ 2 (44) = 113.492 (p 0.001); Comparative Fit Index = 0.965; Root Mean Square Error of Approximation = 0.079[0.062,0.097]; and Standarized Root Mean-Square = 0.037. Evidence of reliability was excellent: Cronbach’s alpha = 0.886 and McDonald’s omega = 0.910. Moral distress was related to discipline, with nurses having statistically significant higher levels than physicians. Additionally, moral distress successfully predicted professional quality of life, with higher levels of moral distress being related to poorer quality of life. Conclusions The Spanish version of Moral Distress Scale–Revised can be used as a reliable and valid measurement tool for the evaluation of moral distress experienced by health professionals. This tool will be highly useful for managers and applicable to a variety of healthcare professionals and settings.
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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 approachAbstract 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 difficulties in explaining, IC and factors related patient’s refusal of medical treatment (RMT). Descriptive statistics for each item and a polychoric correlation analysis of the problems and factors related to the explanation were conducted. As a result, fifty-six physicians were participated (rate of return: 39%). Explaining the disease and treatment to patients (83.9%), IC to patients (80.4%), and explaining the disease and treatment to parents (78.6%) was particularly problematic. Difficulties to provide support related with patient’s refusal of medical treatment and to explain disease and treatment for patient and parents were related to difficulties obtaining IC for the patient. Conclusion: There are clinically difficult to explain for the patient or parents and to obtain IC for the patient. It is necessary to establish a disease acceptance assessment tool for the adolescence generation so that it can be applied in the field.
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Clinical ethics consultation documentation in the era of open notesAbstract 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 prior to open notes, how an ethics consultant should document a clinical ethics consultation was widely debated as there can be competing interests, differing moral values, and disagreement about pertinent medical information in any given encounter. Patients can now access documentation of these discussions through online portals which broach sensitive topics related to end-of-life care, autonomy, religious/cultural conflict, veracity, confidentiality, and many others. Clinical ethics consultation notes must be ethically robust, accurate, and helpful for healthcare workers and ethics committee members, but now also sensitive to the needs of patients and family members who can read them in real-time. Conclusion We explore implications of open notes for ethics consultation, review clinical ethics consultation documentation styles, and offer recommendations for documentation in this new era.
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Project DECIDE, part II: decision-making places for people with dementia in Alzheimer’s disease: supporting advance decision-making by improving person-environment fitAbstract Background The 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, which, although one criterion of capacity to consent, is not sufficient to ensure overall capacity to consent. The aim of the ‘spatial intervention study’ of the DECIDE project is to examine an innovative resource-oriented SDM approach that focuses on relational aspects. We hypothesise that talking to PwAD in their familiar home setting (as opposed to a clinical setting) will reduce the complexity of the decision-making process and enhance overall capacity to consent. Methods People with a suspected or confirmed diagnosis of dementia in Alzheimer’s disease will be recruited from two memory clinics (N = 80). We will use a randomised crossover design to investigate the intervention effect of the decision-making place on capacity to consent. Besides reasoning capacity, which is part of overall capacity to consent and will be the primary outcome, various secondary outcomes (e.g., other aspects of capacity to consent, subjective task complexity, decisional conflict) and suspected moderating or mediating variables (e.g., meaning of home, demographic characteristics) will be assessed. Discussion The results of the study will be used to develop a new SDM strategy that is based on relational resources for PwAD. If a change in location achieves the anticipated improvement in capacity to consent, future research should focus on implementing this SDM strategy in a cost-effective manner in clinical practice. Trial registration: DRKS00030799 .
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Severity as a moral qualifier of maladyAbstract 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 malady incites. We then analyze how severity may qualify this impetus. We do so by discussing the relationship between severity and need, well-being and disvalue, death, urgency, rule of rescue, and distributive justice. We then summarize our thoughts about severity as a moral qualifier. We conclude that severity is, and should continue to be seen, as a morally significant concept that deserves continued attention in the future.
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Mapping ethical issues in the use of smart home health technologies to care for older persons: a systematic reviewAbstract 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 persons. Results 156 peer-reviewed articles published in English, German and French were retrieved and analyzed across 10 electronic databases. Using narrative analysis, 7 ethical categories were mapped: privacy, autonomy, responsibility, human vs. artificial interactions, trust, ageism and stigma, and other concerns. Conclusion The findings of our systematic review show the (lack of) ethical consideration when it comes to the development and implementation of SHHTs for older persons. Our analysis is useful to promote careful ethical consideration when carrying out technology development, research and deployment to care for older persons. Registration We registered our systematic review in the PROSPERO network under CRD42021248543.
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Experience and perspectives of end-of-life care discussion and physician orders for life-sustaining treatment of Korea (POLST-K): a cross-sectional studyAbstract Background This 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. Methods A 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 SPSS 24.0 program. Results Study results showed that respondents were aware of terminal illness and physician’s order of life-sustaining treatment in Korea well enough except for some details. Physicians reported uncertainty in terminal state diagnosis and disease trajectory as the most challenging. Study participants regarded factors (related to relationships and communications) on the healthcare providers’ side as the major impediment to end-of-life discussion. Study respondents suggested that simplification of the process and more staff are required to facilitate end-of-life discussion and documentation. Conclusion Based on the study results, adequate education and training for better end-of-life discussion are required for future practice. Also, a simple and clear procedure for completing a physician’s order of life-sustaining treatment in Korea should be prepared and legal and ethical advice would be required. Since the enactment of the Life-Sustaining Treatment Act, several revisions already have been made including disease categories, thus continuous education to update and support clinicians is also called for.
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Emergency separation of conjoined twins in a tertiary hospital in Indonesia: three case reportsAbstract Background Emergency 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 presentation From 1987 to 2022, 18 conjoined twin separations were performed in our centre. This paper describes three conjoined twin emergency separations. In the first case of thoracoomphalopagus babies at nine days of age, one baby was diagnosed with necrotizing enterocolitis with frequent desaturation and seizures, and the other baby was healthy. Emergency separation was performed on the twelfth day of age; unfortunately, neither baby survived the surgery. In the second case, emergency separation was performed on the 110th day of life due to sepsis in one baby. The nonseptic twin passed away six hours after surgery, while the septic twin died 12 days after surgery due to wound dehiscence and abdominal sepsis. The third case was of an omphalopagus conjoined twin with a parasitic twin. The healthy baby was deemed nonviable but found to be healthy upon birth. Immediate emergency separation was performed at 2 h of age. The living baby survived the surgery but passed away two months later. Conclusions When separation is deemed necessary to save one twin, it becomes difficult to apply standard ethical medical reasoning. The decision to separate results in most cases in very high-risk surgeries with poor outcomes during surgery and postsurgery. Compounded by the complexity of the case, sociocultural and religious aspects further add to the dynamics of decision-making. A multidisciplinary team must work together with a health ethics committee and navigate through this ethical conundrum with the patient and family at its decision-making centre to decide on the best plan of care.
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Equivalence of care, confidentiality, and professional independence must underpin the hospital care of individuals experiencing incarcerationAbstract 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 in the general population, including in-patient services. All the other established standards to uphold the health and dignity of people experiencing incarceration should also apply to in-patient care, whether this takes place outside or inside the prison boundaries. Our reflection focuses on the principles of confidentiality, professional independence, and equivalence of care. We argue that the respect for these three principles, although they present specific implementation challenges, is foundational for implementing the other principles. Critically important are respect for the distinct roles and responsibilities of healthcare and security staff as well as transparent and non-hierarchical dialogue between them to ensure optimal health outcomes and functioning of hospital wards while balancing the ongoing tensions between care and control.
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Citizen attitudes to non-treatment decision making: a Norwegian surveyAbstract Background Decisions 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 role of next of kin in decision-making. Methods Electronic survey to members of a nationally representative panel of Norwegian adults. Respondents were presented with vignettes describing patients with disorders of consciousness, dementia, and cancer where patient preferences varied. Respondents answered ten questions about the acceptability of non-treatment decision making and the role of next of kin. Results We received 1035 complete responses (response rate 40.7%). A large majority, 88%, supported the right of competent patients to refuse treatment in general. When an NTD was in line with the patient’s previously expressed preferences, more respondents tended to find NTDs acceptable. More respondents would accept NTDs for themselves than for the vignette patients. In a scenario with an incompetent patient, clear majorities wanted the views of next of kin to be given some but not decisive weight, and more weight if concordant with the patient’s wishes. There were, however, large variations in the respondents’ views. Conclusion This survey of a representative sample of the Norwegian adult population indicates that attitudes to NTDs are often in line with national laws and guidelines. However, the high variance among the respondents and relatively large weight given to next of kin’s views, indicate a need for appropriate dialogue among all stakeholders to prevent conflicts and extra burdens. Furthermore, the emphasis given to previously expressed opinions indicates that advance care planning may increase the legitimacy of NTDs and prevent challenging decision-making processes.
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Patients acceptance and comprehension to written and verbal consent (PAC–VC)Abstract Background Acute 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. Methods PAC–VC recruited patients from 3 AMI trials using both verbal N = 12 and written N = 6 consents. We compared patients’ understanding using two survey questionnaires. The first questionnaire used open-ended questions with multiple choice answers. The second questionnaire used a 5-point Likert scale to measure patients understanding and attitudes to the consent process. Overall answers average scores were categorized into three groups: Adequate understanding (71–100) %, Partial understanding (41–70)% and Inadequate understanding (0–40)%. Results Responses showed patients with verbal assent had adequate understanding to most components of informed consent, close to those of written consent. Most patients did not read written information entirely and believed that it is not important to make a final decision. Patients favoured to have written information be part of the consent but not necessarily presented during the initial consent process. Patients felt less pressured in the verbal assent arm than those of written consent. Conclusion Patients had adequate understanding to most components of verbal assent and comparable to those of written consent. Utilizing verbal assents in the acute care setting should be further assessed in larger trials.
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Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiencesAbstract 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 study using semi-structured interviews with key informants. Seven physicians and ten nurses were interviewed. Interviews were analysed using inductive qualitative content analysis. Results The respondents’ ethical challenges and values in recruitment mainly concerned establishing relationships and trust, meeting informational needs, acknowledging vulnerability, and balancing roles and interests. Ensuring ethical competence was raised as important, and interpersonal and communicative skills were highlighted. Conclusion This study provides empirical insight into recruitment of children with cancer, from the perspectives of healthcare professionals. It also contributes to the understanding of recruitment as a relational process, where aspects of vulnerability, trust and relationship building are important, alongside meeting informational needs. The results provide knowledge on the complexities raised by paediatric research and underpin the importance of building research ethics competence to ensure that the rights and interests of children with cancer are protected in research.
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Personal health monitoring in the armed forces – scouting the ethical dimensionAbstract 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 than PHM of civilians, because of their tasks and the context in which they operate. This case study therefore focusses on obtaining insights into the experiences and related values of different stakeholders regarding an existing form of PHM, the Covid-19 Radar app, in the Netherlands Armed Forces. Methods We carried out an exploratory qualitative study, using semi-structured interviews with twelve stakeholders in the Netherlands Armed Forces. We focussed on participation in the use of PHM, reflections on the practical use and use of data, moral dilemmas and the need for ethics support, all in regard to PHM. The data was analysed using an inductive thematic approach. Results Three interlinking categories reflecting ethical dimensions of PHM emerged: (1) values, (2) moral dilemmas, and (3) external norms. The main values identified were: security (in relation to data), trust and hierarchy. Multiple related values were found. Some, but no broadly shared, moral dilemmas were identified and no strong need for ethics support was expressed. Conclusion This study shed light on key values, provide insights in the experienced and presumed moral dilemmas and bring to mind ethics support considerations when looking at PHM in the armed forces. Some values bring a certain vulnerability to military users when personal and organisational interests are not aligned. Furthermore, some identified values may hinder a careful consideration of PHM because they potentially conceal parts of ethical dimensions of PHM. Ethics support can assist in uncovering and addressing these concealed parts. The findings highlight a moral responsibility for the armed forces to devote attention to the ethical dimensions of PHM.
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Physician-reported characteristics, representations, and ethical justifications of shared decision-making practices in the care of paediatric patients with prolonged disorders of consciousnessAbstract Background Despite 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 prolonged disorders of consciousness (PDOC). Specifically, we focused on physicians’ SDM approaches, representations, and ethical justifications for engaging in SDM. Methods We used a qualitative approach to explore the SDM experiences of 13 ICU physicians, paediatricians, and neurologists based in Switzerland who have been or were involved in the care of paediatric patients living with PDOC. A semi-structured interview format was used and interviews were audio-recorded and transcribed. Data were analysed through thematic analysis. Results We found that participants followed three main decision-making approaches: the “brakes” approach, characterized by maximized family’s decisional freedom, though conditional to physician’s judgment regarding the medical appropriateness of a treatment; the “orchestra director” approach, characterized by a multi-step decision-making process led by the main physician aimed at eliciting the voices of the care team members and of the family; and the “sunbeams” approach, characterized by a process oriented to reach consensus with family members through dialogue, where the virtues of the physician are key to guide the process. We also found that participants differed in the moral justifications sustaining each approach, citing the duty to respect parental autonomy, to invest in an ethics of care, and to employ physicians’ virtues to guide the decision-making process. Conclusion Our results show that physicians come to perform SDM in different ways, with several representations, and distinct ethical justifications. SDM training among health care providers should clarify the ductility of SDM and the several ethical motivations underpinning it, rather than insisting on the principle of respect for patient’s autonomy as its only moral foundation.
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Biases in bioethics: a narrative reviewAbstract 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 by no means is absolute, it provides initial guidance with respect to assessing the relevance of various biases for specific kinds of bioethics work. One reason why we should identify and address biases in bioethics is that it can help us assess and improve the quality of bioethics work.
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The impact on patients of objections by institutions to assisted dying: a qualitative study of family caregivers’ perceptionsAbstract 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 one patient about the experience of 28 patients who sought assisted dying. Participants were interviewed during August-November 2021. Data from the 17 interviews (all with family caregivers) which reported institutional objection were analysed thematically. Results Participants reported institutional objection affecting eligibility assessments, medication access, and taking the medication or having it administered. Institutional objection occurred across health settings and was sometimes communicated obliquely. These objections resulted in delays, transfers, and choices between progressing an assisted dying application and receiving palliative or other care. Participants also reported objections causing adverse emotional experiences and distrust of objecting institutions. Six mediating influences on institutional objections were identified: staff views within objecting institutions; support of external medical practitioners and pharmacists providing assisted dying services; nature of a patient’s illness; progression or state of a patient’s illness; patient’s geographical location; and the capability and assertiveness of a patient and/or caregiver. Conclusions Institutional objection to assisted dying is much-debated yet empirically understudied. This research found that in Victoria, objections were regularly reported by participants and adversely affected access to assisted dying and the wider end-of-life experience for patients and caregivers. This barrier arises in an assisted dying system that is already procedurally challenging, particularly given the limited window patients have to apply. Better regulation may be needed as Victoria’s existing policy approach appears to preference institutional positions over patient’s choice given existing power dynamics.
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The conundrums of the reasonable patient standard in English medical lawAbstract Background In 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 requirements on doctors is discernible in subsequent decisions since then. Main body In this narrative review, without questioning the idea that properly informed patients should play a more active role in procedures affecting their own health in furtherance of their autonomy, safety, and consumer rights, we identify and analyse, with the aid of realistic clinical thought experiments, three practical conundrums that the Montgomery standard may inflict on the daily work of doctors, unfairly exposing them to arbitrary legal risks. Conclusions These conundrums pertain to the ascertainment of the risks that must be disclosed to the patient under the test of ‘materiality’; the legal uncertainty as to the scope of the exceptions; and the actual ability of doctors to cope with the pressures of time. These conundrums offer ripe opportunities to rethink the proper role of judicially developed medical law in modern health care practice.