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Over the past decades, literature in dementia ethics has extensively looked at moral questions revolving around the care of older people living with dementia. Particularly prevalent are autonomy-related concerns regarding topics such as advance directives. In this paper, we argue that these discussions are crucially premised on how dementia is understood and represented. Despite the multiplicity of dementia presentations in people, the dominant discourse predominantly frames dementia as 'monstrous,' an 'enemy,' a destructive experience in need of eradication. We contend that such a monolithic approach, from a moral standpoint, is problematic in several respects. Indeed, framing heavily influences the way dementia is understood and experienced, leading to stigmatization, bias, and distress. Not only does it influence decisions and discussions on advance directives, but we argue that this flawed understanding of dementia is rooted in and contributes to epistemic harm. In the first section, we introduce the ethics of advance directives. More specifically, we introduce the view developed by Dworkin who has largely influenced the debate by making the case for advance directives by grounding them in the principles of autonomy and beneficence. In the second section, we show how dementia is still mostly framed monolithically as a 'destructive experience.' We then show that this framing is problematic because it oversteps the different pathologies dementia implies, which leads to an inaccurate representation of the condition. In the third section, we present possible alternative framings: dementia as normal aging, a person-centered care framework, and an embodied view. In the fourth section, drawing on recent developments in the epistemic injustice literature, we explore how maintaining and utilizing flawed understandings of dementia may lead to distinct moral-epistemic harms for those living with dementia and inform ongoing discussions on advance directives. Finally, in the concluding section, we return to the case of advance directives and what the implications of rethinking dementia are. [ABSTRACT FROM AUTHOR]

Introduction: Advance directives (ADs) has recently been considered as an important component of palliative care for patients with advanced cancer and is a legally binding directive regarding a person's future medical care. It is used when a person is unable to participate in the decision-making process about their own care. Therefore, the present systematic review investigated the factors related to ADs from the perspective of cancer patients. Methods: A systematic review study was searched in four scientific databases: PubMed, Medline, Scopus, Web of Science, and ProQuest using with related keywords and without date restrictions. The quality of the studies was assessed using the Hawker criterion. The research papers were analyzed as directed content analysis based on the theory of planned behavior. Results: Out of 5900 research papers found, 22 were included in the study. The perspectives of 9061 cancer patients were investigated, of whom 4347 were men and 4714 were women. The mean ± SD of the patients' age was 62.04 ± 6.44. According to TPB, factors affecting ADs were categorized into four categories, including attitude, subjective norm, perceived behavioral control, and external factors affecting the model. The attitude category includes two subcategories: "Lack of knowledge of the ADs concept" and "Previous experience of the disease", the subjective norm category includes three subcategories: "Social support and interaction with family", "Respecting the patient's wishes" and "EOL care choices". Also, the category of perceived control behavior was categorized into two sub-categories: "Decision-making" and "Access to the healthcare system", as well as external factors affecting the model, including "socio-demographic characteristics". Conclusion: The studies indicate that attention to EOL care and the wishes of patients regarding receiving medical care and preservation of human dignity, the importance of facilitating open communication between patients and their families, and different perspectives on providing information, communicating bad news and making decisions require culturally sensitive approaches. Finally, the training of cancer care professionals in the palliative care practice, promoting the participation of health care professionals in ADs activities and creating an AD-positive attitude should be strongly encouraged. [ABSTRACT FROM AUTHOR]

Advance directives (ADs) have for some time been championed by ethicists and patient associations alike as a tool that people newly diagnosed with dementia, or prior to onset, may use to ensure that their future care and treatment are organized in accordance with their interests. The idea is that autonomous people, not yet neurologically affected by dementia, can design directives for their future care that caregivers are morally obligated to respect because they have been designed by autonomous individuals. In this paper, we first criticize the idea that ADs can retain moral authority in severe dementia by arguing that it is paradoxical. Second, we consider two arguments that initially seem to refute this critique of ADs, but we eventually dismiss them. The first argument states that ADs retain moral authority in severe dementia because autonomously formed interests, for example, ADs, can only be appropriately discarded by autonomous persons. This we term the historical autonomy argument. We dismiss it by demonstrating how we, in analog cases, are not obligated to continue to respect autonomously formed interests even though they have been discarded under nonappropriate conditions. The second argument is that ADs can be justified by what we term external interests. While we agree that people with severe dementia plausible can be said to have external interests, we show that ADs cannot express such interests and hence cannot be justified by them. We conclude that none of the discussed arguments support the use of ADs and because of this, the idea of ADs should be reassigned. [ABSTRACT FROM AUTHOR]

To effectively identify the key material parameters of different zones of concrete face rockfill dams and improve the efficiency of parameter optimization, a global sensitivity analysis method of parameters based on sparse polynomial chaotic expansion (sPCE) is proposed in this paper. The latin hypercube sampling method is used to select multiple groups of material parameters, and then finite element method is used to calculate the displacement of dam characteristic nodes in dam body. On this basis, the displacement is expanded by sPCE, and the polynomial basis function is reconstructed by orthogonal matching pursuit to improve the construction and analysis efficiency of the proxy model. According to the chaos coefficients, Sobol' indices are calculated to evaluate the influence of the material parameters and their interaction on different displacements of the dam. The results show that the sPCE model can accurately simulate dam displacement and its statistical characteristics with a relatively small sample size. The sensitivity of the same parameter has spatial variability, and under the influence of parameter levels and spatial distribution of different materials, the parameter sensitivity ranking of different zones has certain differences. The proposed method provides a new reference to sensitivity analysis and uncertainty analysis for practical engineering., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2023 Ran et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Under the Victorian 2014 Mental Health Act (MHA14), Victorians have a right to advance statements. While there have been initiatives to support uptake, under 3% of consumers have done so. In March 2021, the Royal Commission into Victoria's Mental Health System (the Commission) released its report, including a call to repeal MHA14 and enact a new Act no later than mid-2022. In this paper, we discuss the role of advance planning documentation and instruments used in Australian legislation. Drawing on the Commission's recommendations, models of advance planning in Australia and the Victorian legislative context, this paper proposes a model of both binding and non-binding advance directives. This model would bring the rights of Victorian consumers into alignment with rights provided under the Medical Treatment, Planning and Decisions Act 2016 (Vic) and assist in bringing the new Act into compatibility with the Charter of Human Rights and Responsibilities Act 2006 (Vic). [ABSTRACT FROM AUTHOR]

Advance directives are intended to extend patient autonomy by enabling patients to prospectively direct the care of their future incapacitated selves. There has been much discussion about issues such as whether the future incompetent self is identical to the agent who issues the advance directive or whether advance directives can legitimately secure patient autonomy. However, there is another important question to ask: to what extent and in what conditions is it ethically appropriate for one to limit the liberty or agency of one's future incompetent self by issuing an advance directive? In this paper, I use a virtue‐ethical approach to explore this question, focusing on the case of an advance directive for the future self with moderate dementia. First, I examine virtuous attitudes with regard to autonomy and argue that one can manifest vices or ethically undesirable character traits in trying to intervene in the future self's life. In particular, I argue that this case can manifest vices such as disdainfulness, intellectual arrogance, and self‐dictatorship, which is the vice of trying to control one's life to an excessive degree, and that a self‐dictator fails to give due moral consideration to the future self's liberty or agency. I then introduce the Daoist idea of wu‐wei, which recommends embracement of what happens in one's life, as one of the possible remedies for the overemphasis on the value of autonomy and control. [ABSTRACT FROM AUTHOR]

Systemic risk refers to the uncertainty that arises due to the breakdown of a financial system. The concept of "too connected to fail" suggests that network connectedness plays an important role in measuring systemic risk. In this paper, we first recover a time series of Bayesian networks for stock returns, which allow the direction of links among stock returns to be formed with Markov properties in directed graphs. We rank the stocks in the time series of Bayesian networks based on the topological orders of the stocks in the learned Bayesian networks and develop an order distance, a new measure with which to assess the changes in the topological orders of the stocks. In an empirical study using stock data from the Hang Seng Index in Hong Kong and the Dow Jones Industrial Average, we use the order distance to predict the extreme absolute return, which is a proxy of extreme market risks, or a signal of systemic risks, using the LASSO regression model. Our results indicate that the network statistics of the time series of Bayesian networks and the order distance substantially improve the predictability of extreme absolute returns and provide insights into the assessment of systemic risk., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2023 Chan et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Dengue fever is an acute mosquito-borne disease that mostly spreads within urban or semi-urban areas in warm climate zones. The dengue-related risk map is one of the most practical tools for executing effective control policies, breaking the transmission chain, and preventing disease outbreaks. Mapping risk at a small scale, such as at an urban level, can demonstrate the spatial heterogeneities in complicated built environments. This review aims to summarize state-of-the-art modeling methods and influential factors in mapping dengue fever risk in urban settings. Data were manually extracted from five major academic search databases following a set of querying and selection criteria, and a total of 28 studies were analyzed. Twenty of the selected papers investigated the spatial pattern of dengue risk by epidemic data, whereas the remaining eight papers developed an entomological risk map as a proxy for potential dengue burden in cities or agglomerated urban regions. The key findings included: (1) Big data sources and emerging data-mining techniques are innovatively employed for detecting hot spots of dengue-related burden in the urban context; (2) Bayesian approaches and machine learning algorithms have become more popular as spatial modeling tools for predicting the distribution of dengue incidence and mosquito presence; (3) Climatic and built environmental variables are the most common factors in making predictions, though the effects of these factors vary with the mosquito species; (4) Socio-economic data may be a better representation of the huge heterogeneity of risk or vulnerability spatial distribution on an urban scale. In conclusion, for spatially assessing dengue-related risk in an urban context, data availability and the purpose for mapping determine the analytical approaches and modeling methods used. To enhance the reliabilities of predictive models, sufficient data about dengue serotyping, socio-economic status, and spatial connectivity may be more important for mapping dengue-related risk in urban settings for future studies.

Background: For the benefits of advance care planning to be realised during a hospital admission, the treating team must have accurate knowledge of the law pertaining to implementation of advance care directives (ACDs) and substitute decision making., Aims: To determine in a sample of Junior Medical Officers (JMOs): (1) knowledge of the correct order to approach people as substitute decision makers if a patient does not have capacity to consent to treatment; (2) knowledge of the legal validity of ACDs when making healthcare decisions for persons without capacity to consent to treatment, including the characteristics associated with higher knowledge; and (3) barriers to enacting ACDs., Methods: A cross-sectional survey was conducted at five public hospitals in New South Wales, Australia. Interns, residents, registrars, and trainees on clinical rotation during the recruitment period were eligible to participate. Consenting participants completed an anonymous pen-and-paper survey., Results: A total of 118 JMOs completed a survey (36% return rate). Fifty-five percent of participants were female and 56.8% were aged 20-29 years. Seventy-five percent of JMOs correctly identified a Guardian as the first person to approach if a patient did not have decision-making capacity, and 74% correctly identified a person's spouse or partner as the next person to approach. Only 16.5% identified all four persons in the correct order, and 13.5% did not identify any in the correct order. The mean number of correct responses to the questions assessing knowledge of the legal validity of ACDs was 2.6 (SD = 1.1) out of a possible score of 6. Only 28 participants (23.7%) correctly answered four or more knowledge statements correctly. None of the explored variables were significantly associated with higher knowledge of the legal validity of ACDs. Uncertainty about the currency of ACDs and uncertainty about the legal implications of relying on an ACD when a patient's family or substitute decision maker disagree with it were the main barriers to enacting ACDs., Conclusion: JMOs knowledge of the legal validity of ACDs for persons without decision making capacity and the substitute decision making hierarchy is limited. There is a clear need for targeted education and training to improve knowledge in this area for this cohort., (© 2022. The Author(s).)

Abstract Introduction Advance directives (ADs) has recently been considered as an important component of palliative care for patients with advanced cancer and is a legally binding directive regarding a person’s future medical care. It is used when a person is unable to participate in the decision-making process about their own care. Therefore, the present systematic review investigated the factors related to ADs from the perspective of cancer patients. Methods A systematic review study was searched in four scientific databases: PubMed, Medline, Scopus, Web of Science, and ProQuest using with related keywords and without date restrictions. The quality of the studies was assessed using the Hawker criterion. The research papers were analyzed as directed content analysis based on the theory of planned behavior. Results Out of 5900 research papers found, 22 were included in the study. The perspectives of 9061 cancer patients were investigated, of whom 4347 were men and 4714 were women. The mean ± SD of the patients’ age was 62.04 ± 6.44. According to TPB, factors affecting ADs were categorized into four categories, including attitude, subjective norm, perceived behavioral control, and external factors affecting the model. The attitude category includes two subcategories: “Lack of knowledge of the ADs concept” and “Previous experience of the disease”, the subjective norm category includes three subcategories: “Social support and interaction with family”, “Respecting the patient’s wishes” and “EOL care choices”. Also, the category of perceived control behavior was categorized into two sub-categories: “Decision-making” and “Access to the healthcare system”, as well as external factors affecting the model, including “socio-demographic characteristics”. Conclusion The studies indicate that attention to EOL care and the wishes of patients regarding receiving medical care and preservation of human dignity, the importance of facilitating open communication between patients and their families, and different perspectives on providing information, communicating bad news and making decisions require culturally sensitive approaches. Finally, the training of cancer care professionals in the palliative care practice, promoting the participation of health care professionals in ADs activities and creating an AD-positive attitude should be strongly encouraged.

Background: General Practitioners (GPs) are central in the care of Dutch older people and in a good position to have Advance Care Planning (ACP) conversations. Interview studies reveal that the doctor-patient relationship is important when initiating ACP conversations and can also be influenced by ACP conversations. We aimed to examine the association between having an ACP conversation and the patient feeling the GP knows him or her and the patient trusting the GP and vice versa.Methods: Implementation of ACP in primary care was evaluated in a pre-and post design. Questionnaires before implementation of ACP and 14 months later were sent to patients aged 75 years or older within 10 GP-practices and 2 care homes. Multivariable logistic regression was used to model the relationship between ACP conversations during implementation and the patient-GP relationship before implementation. Odds ratios were adjusted for potential confounders. Generalized ordered logistic regression was used to model the relationship between the changes in patient-GP relationship before and after implementation and ACP conversations during implementation.Results: Four hundred fifty-eight patients filled out the pre- and post-test questionnaire. There was no association between the GP knowing the patient and trust in the pre-test and having an ACP conversation during the implementation. For people who had had an ACP conversation at the end of the implementation period their trust remained more often the same or was higher after implementation (trust to provide good care OR 2.93; trust to follow their wishes OR 2.59), compared to patients who did not have an ACP conversation. A reduction in trust was less likely to happen to patients who had an ACP conversation compared to patients who did not have an ACP conversation.Conclusions: Although we have not found evidence for trust as a prerequisite for ACP conversations, this paper shows that ACP conversations can be beneficial for the doctor-patient relationship. [ABSTRACT FROM AUTHOR]

Background: Advance research directives (ARD) have been suggested as a means by which to facilitate research with incapacitated subjects, in particular in the context of dementia research. However, established disclosure requirements for study participation raise an ethical problem for the application of ARDs: While regular consent procedures call for detailed information on a specific study ("token disclosure"), ARDs can typically only include generic information ("type disclosure"). The introduction of ARDs could thus establish a double standard in the sense that within the context of ARDs, type disclosure would be considered sufficient, while beyond this context, token disclosure would remain necessary., Main Body: This paper provides an ethical analysis of ARDs, taking into account the results of numerous empirical studies that have been performed so far. It will be argued that a revised understanding of informed consent can allow for context-sensitive disclosure standards. As a consequence, ARDs that include type disclosure can be acceptable under suitable circumstances. Such an approach raises a number of objections. A thorough examination shows, however, that they are not sufficient to justify a rejection of the approach., Conclusion: The approach presented in this paper avoids introducing a double standard. It is, therefore, more suitable for the implementation of ARDs than established approaches., (© 2021. The Author(s).)

Advance directives are intended to extend patient autonomy by enabling patients to prospectively direct the care of their future incapacitated selves. There has been much discussion about issues such as whether the future incompetent self is identical to the agent who issues the advance directive or whether advance directives can legitimately secure patient autonomy. However, there is another important question to ask: to what extent and in what conditions is it ethically appropriate for one to limit the liberty or agency of one's future incompetent self by issuing an advance directive? In this paper, I use a virtue‐ethical approach to explore this question, focusing on the case of an advance directive for the future self with moderate dementia. First, I examine virtuous attitudes with regard to autonomy and argue that one can manifest vices or ethically undesirable character traits in trying to intervene in the future self's life. In particular, I argue that this case can manifest vices such as disdainfulness, intellectual arrogance, and self‐dictatorship, which is the vice of trying to control one's life to an excessive degree, and that a self‐dictator fails to give due moral consideration to the future self's liberty or agency. I then introduce the Daoist idea of wu‐wei, which recommends embracement of what happens in one's life, as one of the possible remedies for the overemphasis on the value of autonomy and control. [ABSTRACT FROM AUTHOR]

Context: Advance Care Planning (ACP), as a process for expressing and recording patients' preferences about end-of-life care, has received increasing attention in recent years. However, implementing ACP has been challenging in Iran. Objectives: To assess the readiness for advance care planning and related factors in the general population of Iran. Methods: This cross-sectional study was conducted on the general population of Iran in 2022. The data was collected using demographic information questionnaire and The RACP Scale. The purpose and methodology of the research was explained to all participants, and upon their agreement an informed consent was obtained. Participants were invited to fill out the questionnaires wherever is more convenient for them, either alone or if needed, with the help of the researcher to protect their privacy. Chi-square, fisher exact test and multiple logistic Regression model were used to assess the effective factors on the RACP. The data were analyzed by SPSS software version 26. Results: A total of 641 people with an average age of 36.85 ± 12.05 years participated in this study. Of those, 377 (58.8%) had high RACP. The logistics model showed an association between the chance of readiness for receiving ACP with participants' education level, such that the chance of readiness in those with Master's or Ph.D. degrees was three times higher than those with a diploma (p = 0.00, OR:3.178(1.672, 6.043)). However, the chances of readiness in those with bachelor's degrees was not significantly different from those with a diploma (p = 0.936, OR: 0.984 (0.654, 1.479)). Moreover, the chance of readiness was 1.5 higher in participants over 40 years of age compared with participants under the age of 40 (P = 0.01, OR: 1.571(1.10, 2.23)). Conclusion: According to the findings of this study, it can be concluded that there is a relatively RACP among people in Iranian society. The readiness of individuals for ACP increases by their age and education level. Therefore, by holding appropriate training intervention, we can increase the readiness of the public for ACP to improve their end-of-life outcome. [ABSTRACT FROM AUTHOR]

Respect for patient autonomy is a bioethical principle that has become increasingly imperative, particularly in the 21st century. However, in many Asian countries, medical paternalism to a larger degree remains prevalent in the healthcare setting. While a doctor is ethically and legally bound to respect a patient's values and wishes in administering treatment, the duty to do so is more complex in end-of-life care, where the patient is unable to partake in the decision-making process. Accordingly, it has been argued that advanced medical directives (AMDs) could ensure that the patient's right to make autonomous decisions is preserved and will not be defeated by any future incapacity. It also serves to extenuate the ethical dilemma faced by doctors in determining the course of treatment according to the incompetent patient's wishes. In turn, this facilitates healthcare providers to manage the distribution of scarce medical resources effectively. The need for AMDs is seen to be increasingly pressing in ageing countries such as Malaysia and Indonesia, where end-of-life care has yet to be integrated into mainstream healthcare services. This paper seeks to discuss the viability of integrating AMDs into the Malaysian and Indonesian regulatory frameworks on health care, by employing the qualitative method of content analysis of both primary and secondary sources of the two countries. Findings show that statutory reform is both recommended and necessary to ensure better management of medical resources, as well as to promote the delivery of a more inclusive and compassionate healthcare system.

Background: Providing individualised healthcare in line with patient wishes is a particular challenge for emergency healthcare professionals. Documentation of patient wishes (DPW), e.g. as advance directives, can guide clinicians in making end-of-life decisions that respect the patient’s wishes and autonomy. However, patient centered decisions are hindered by limited availability of DPWs in emergency settings. Objective: This systematic review aims to congregate present data on recorded rates for DPW existence and availability in the emergency department (ED) as well as contributing factors for these rates. Methods: We searched MEDLINE, Google Scholar, Embase and Web of Science databases in September 2023. Publications providing primary quantitative data on DPW in the ED were assessed. Publications referring only to a subset of ED patients (other than geriatric) and investigating DPW issued after admission were excluded. Results: A total of 22 studies from 1996 to 2021 were included in the analysis. Most were from the US (n = 12), followed by Australia (n = 4), Canada (n = 2), South Korea, Germany, the United Kingdom and Switzerland (n = 1 each). In the general adult population presenting to the ED, 19.9–27.8% of patients reported having some form of DPW, but only in 6.8% or less it was available on presentation. In the geriatric population, DPW rates (2.6–79%) as well as their availability (1.1–48.8%) varied widely. The following variables were identified as positive predictors of having DPW, among others: higher age, poorer overall health, as well as sociodemographic factors, such as female gender, having children, being in a relationship, higher level of education or a recent previous presentation to hospital. Conclusions: Existence and availability of a recorded DPW among ED patients was low in general and even in geriatric populations mostly well below 50%. While we were able to gather data on prevalence and predictors, this was limited by heterogeneous data. We believe further research is needed to explore the quality of DPW and measures to increase both rates of existence and availability of DPW in the ED. [ABSTRACT FROM AUTHOR]

Over the past decades, literature in dementia ethics has extensively looked at moral questions revolving around the care of older people living with dementia. Particularly prevalent are autonomy-related concerns regarding topics such as advance directives. In this paper, we argue that these discussions are crucially premised on how dementia is understood and represented. Despite the multiplicity of dementia presentations in people, the dominant discourse predominantly frames dementia as ‘monstrous,’ an ‘enemy,’ a destructive experience in need of eradication. We contend that such a monolithic approach, from a moral standpoint, is problematic in several respects. Indeed, framing heavily influences the way dementia is understood and experienced, leading to stigmatization, bias, and distress. Not only does it influence decisions and discussions on advance directives, but we argue that this flawed understanding of dementia is rooted in and contributes to epistemic harm. In the first section, we introduce the ethics of advance directives. More specifically, we introduce the view developed by Dworkin who has largely influenced the debate by making the case for advance directives by grounding them in the principles of autonomy and beneficence. In the second section, we show how dementia is still mostly framed monolithically as a ‘destructive experience.’ We then show that this framing is problematic because it oversteps the different pathologies dementia implies, which leads to an inaccurate representation of the condition. In the third section, we present possible alternative framings: dementia as normal aging, a person-centered care framework, and an embodied view. In the fourth section, drawing on recent developments in the epistemic injustice literature, we explore how maintaining and utilizing flawed understandings of dementia may lead to distinct moral-epistemic harms for those living with dementia and inform ongoing discussions on advance directives. Finally, in the concluding section, we return to the case of advance directives and what the implications of rethinking dementia are.

Background: On December 2017 the Italian Parliament approved law n. 219/2017 "Provisions for informed consent and advance directives" regarding challenging legal and bioethical issues related to healthcare decisions and end-of life choices. The law promotes the person's autonomy as a right and provides for the centrality of the individual in every scenario of health care by mean of three tools: informed consent, shared care planning and advance directives. Few years after the approval of the law, we conducted a survey among physicians working in four health care facilities specific for the care of people suffering from psychiatric disorders, cognitive disorders and dementia located in the North of Italy aiming to investigate their perceived knowledge and training need, attitudes regarding law n. 219/2017 provisions, and practices of implementation of the law. Methods: A semi-structured questionnaire was developed on an online platform. The invitation to participate in the survey was sent by email to the potential participants. Information was collected by means of the online platform (Google Forms) which allows to export data in a spreadsheet (Windows Excel) to perform basic statistical analysis (frequency distributions, bar chart representation). Results: Twenty-five out of sixty physicians participated in the survey. None of the respondents value their knowledge of the law as very good, 10 good, 13 neither poor nor good, 1 poor and 1 very poor. All the respondents want to learn more about the law (21 yes and 4 absolutely yes). The majority of respondents agrees with the content of the law as a whole (3 absolutely agree, 13 agree), and on each provision. The question on the clarity of the concept of capacity in the law received mixed answers and this impacted on the physicians' opinion regarding the legitimacy in principle for our groups of patients to realize shared care planning and write advance directives. Thirteen physicians neither introduced the theme of shared care planning nor arranged for shared care planning and the main reason for this was that no patient was in a clinical situation to require it. When shared care planning is realized, a variability in terms of type and number of meetings, mode of tracking and communication is registered. Conclusions: Our survey results indicate a need for more clarity regarding the interpretation and implementation of the law in the patient groups under study. There are in particular two related areas that deserve further discussion: (1) the question of whether these patient groups are in principle legitimized by the law to realize shared care planning or write advance directives; (2) the notion of capacity required by the law and how this notion can be declined in real-life situations. [ABSTRACT FROM AUTHOR]

Background: Ethics education in medical schools lacks uniformity, yielding uncertainty when providers are faced with ethically complex patients. Without streamlined ethics training, providers are less confident in their ability to provide ethically appropriate care for all patients, particularly for those most ethically vulnerable. This case report seeks to elucidate ethical concerns when treating an ethically complex patient. Subsequently, the need for early ethics education is substantiated. The Case: A 58-year-old unhoused patient with no known medical history presented to the emergency department (ED) for evaluation of an infected foot wound. Imaging confirmed acute gas gangrene osteomyelitis. The patient refused the recommended below-the-knee amputation (BKA) but was amenable to intravenous antibiotic therapy. He was subsequently determined by psychiatry to lack decisional capacity and met the DSM-5 criteria for schizoaffective psychosis. Subsequently, the patient’s brother deferred decision-making to the patient, who he believed should make his own medical decisions. Following an ethics consultation, the brother’s decision, and by proxy the patient’s, was respected. Conclusion: In this case, the patient’s autonomy was prioritized, despite his high level of ethical vulnerability. Ethically conscious treatment was provided despite the implicit stigmatization of homelessness and psychiatric illness. However, an ethics consultation was necessary for this to occur. Ultimately, this paper should serve as a call to action for standardization and prioritization of ethics education during and beyond medical training.

Background: Anticipatory planning in the UK focuses on supporting people who anticipate periods of impaired capacity to express their wishes about future care through processes such as advance care planning. Other countries have extended anticipatory planning to include processes for people to prospectively express their preferences about research participation. Advance research planning (ARP) is thought to extend autonomy and ensure that 'proxy' decisions about research are based on their wishes and preferences. Methods: A cross-sectional survey was conducted with two stakeholder groups (members of the public including people living with capacity-affecting conditions and family members; researchers and other professionals) who were recruited via research registries and other routes. Online questionnaires were used to capture the perspectives of the two groups. Responses were analysed using descriptive statistics and content analysis. Results: A total of 327 participants (members of the public n = 277, professionals n = 50) completed the survey (November 2022 - March 2023). ARP was supported by 97% of public contributors and 94% of professionals. Participants thought that ARP should include the person's general wishes about research, specific types of studies, and who should make decisions on their behalf. They identified a number of challenges, including how ARP could take account of changes in individuals' preferences or circumstances whilst protecting their rights and interests. Implementation barriers included the potential time, complexity, and cost involved. These could be addressed by embedding ARP in existing anticipatory planning pathways and aligning it with other research enrolment activities. Relationships and trust played a key role, including underpinning who should support the delivery of ARP, how they are trained, and when it is undertaken. Conclusions: There were high levels of support for introducing ARP in the UK. Further research should explore practical barriers and stakeholder concerns and identify any unintended consequences. Future activities should include developing ARP interventions alongside training and other resources, and also focus on public awareness campaigns, and engaging policymakers and other stakeholders. [ABSTRACT FROM AUTHOR]

Background: The UK government committed to legislating for Advance Choice Documents/Advance Statements (ACD/AS) following their recommendation by the Independent Review of the MHA (2018). ACDs/AS are yet to be implemented in routine practice despite evidence and high demand; they are associated with improved therapeutic relationships and a reduction (25%, RR 0.75, CI 0.61–0.93) in compulsory psychiatric admission. Barriers to their implementation are well documented, ranging from low knowledge levels to logistical challenges in accessing the content during episodes of acute care. In the UK this is an issue for Black people, who experience detention rates disproportionately (over three times) higher than those of White British people and have poorer care experiences and outcomes. ACDs/AS allow for Black people to have their concerns heard by mental health professionals in a care system where they often feel their views are ignored. AdStAC aims to improve Black service users’ experiences in mental health services in South London by co-producing and testing an ACD/AS implementation resource with Black service users, mental health professionals and carers/supporters of Black service users. Methods/design: The study will take place in South London, England over three phases: 1) formative work through stakeholder workshops; 2) co-production of resources through a consensus development exercise and working groups; and 3) testing of the resources using quality improvement (QI) methods. A lived experience advisory group, staff advisory group and project steering committee will support the study throughout. The implementation resources will comprise: advance choice document/advance statement (ACD/AS) documentation, stakeholder trainings, a manual for mental health professionals to facilitate the processes of creating and revising advance statements, and informatics development. Discussion: The implementation resources will help increase the likelihood of the new mental health legislation in England being implemented effectively; through aligning evidence-based medicine, policy and law to effectively provide positive clinical, social and financial outcomes for Black people, the National Health Service (NHS) and wider society. This study will likely benefit a wider group of people with severe mental illness, as when marginalised groups who are least engaged, can be supported with these strategies, then the strategies are likely to work for others. [ABSTRACT FROM AUTHOR]

Background: Life-limited patients may lose decision-making abilities during disease progression. Advance care planning can be used as a discussion method for healthcare professionals to understand patients' future care preferences. However, due to many difficulties, the participation rate of healthcare professionals in advance care planning is not high. Aim: To explore the facilitators of and barriers to healthcare professionals' provision of advance care planning to life-limited patients to better implement it for this population. Methods: We followed ENTREQ and PRISMA to guide this study. We conducted a systematic search of PubMed, Web of Science, Embase, CINAHL, PsycINFO, CNKI, and SinoMed to include qualitative data on the experiences and perspectives of healthcare professionals in different professional fields in providing advance care planning for life-limited patients. The Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research was used to assess the quality of the included studies. Results: A total of 11 studies were included. Two themes were identified: unsupported conditions and facilitative actions. Healthcare professionals regarded cultural concepts, limited time, and fragmented record services as obstacles to implementation. They had low confidence and were overly concerned about negative effects. They needed to possess multiple abilities, learn to flexibly initiate topics, and facilitate effective communication based on multidisciplinary collaboration. Conclusion: Healthcare professionals need an accepting cultural environment to implement advance care planning, a sound legal system, financial support, and a coordinated and shared system to support them. Healthcare systems need to develop educational training programs to increase the knowledge and skills of healthcare professionals and to promote multidisciplinary collaboration to facilitate effective communication. Future research should compare the differences in the needs of healthcare professionals in different cultures when implementing advance care planning to develop systematic implementation guidelines in different cultures. [ABSTRACT FROM AUTHOR]

Abstract Background General Practitioners (GPs) are central in the care of Dutch older people and in a good position to have Advance Care Planning (ACP) conversations. Interview studies reveal that the doctor-patient relationship is important when initiating ACP conversations and can also be influenced by ACP conversations. We aimed to examine the association between having an ACP conversation and the patient feeling the GP knows him or her and the patient trusting the GP and vice versa. Methods Implementation of ACP in primary care was evaluated in a pre-and post design. Questionnaires before implementation of ACP and 14 months later were sent to patients aged 75 years or older within 10 GP-practices and 2 care homes. Multivariable logistic regression was used to model the relationship between ACP conversations during implementation and the patient-GP relationship before implementation. Odds ratios were adjusted for potential confounders. Generalized ordered logistic regression was used to model the relationship between the changes in patient-GP relationship before and after implementation and ACP conversations during implementation. Results Four hundred fifty-eight patients filled out the pre- and post-test questionnaire. There was no association between the GP knowing the patient and trust in the pre-test and having an ACP conversation during the implementation. For people who had had an ACP conversation at the end of the implementation period their trust remained more often the same or was higher after implementation (trust to provide good care OR 2.93; trust to follow their wishes OR 2.59), compared to patients who did not have an ACP conversation. A reduction in trust was less likely to happen to patients who had an ACP conversation compared to patients who did not have an ACP conversation. Conclusions Although we have not found evidence for trust as a prerequisite for ACP conversations, this paper shows that ACP conversations can be beneficial for the doctor—patient relationship.

Background: On December 2017 the Italian Parliament approved law n. 219/2017 "Provisions for informed consent and advance directives" regarding challenging legal and bioethical issues related to healthcare decisions and end-of-life choices. The law does not contain an explicit reference to Ethics Committees (ECs), but they could still play a role in implementing the law.Methods: A questionnaire-based survey was performed among the ECs of the Italian Institute for Research and Care belonging to the Network of neuroscience and neurorehabilitation, with the aim of (1) knowing whether the ECs participated and, if so, how in the process of implementation of law n. 219/2017 in the referring institutes; (2) investigating the point of view of the ECs regarding their possible involvement in the process; (3) exploring the contribution ECs can provide to give effective implementation to the law principles and provisions.Results: Seventeen ECs out of thirty took part in the survey; the characteristics of the responding and non-responding committees are similar, so the responding ECs can be regarded as representative of all ECs in the Network. Nine ECs did not discuss the law in anyway: the main reason for this is that the referring institutions (6) and the health care professionals (3) did not ask for an EC intervention. Nevertheless, the large majority of the ECs believe that their involvement in the implementation of the law as a whole is appropriate (8) or absolutely appropriate (6), while 3 of them are neutral. No EC believes that the involvement is inappropriate. The aspect of the law on which the 14 ECs converge in considering the EC involvement appropriate/absolutely appropriate is the one related to the health facilities obligation to guarantee the full and proper implementation of the principles of the law.Conclusions: Our survey confirms that ECs believe they can play a role in the implementation of law n. 219/2017, although this does not entirely correspond to what the committees have actually done in reality. This role could be better exercised by ECs specifically established for clinical practice, which would have a composition, functioning and a mandate better suited to the purpose. This supports the call for a national regulation of ECs for clinical practice. [ABSTRACT FROM AUTHOR]

Background: The terminal illness of late-stage (advanced) Alzheimer's and related dementias is progressively cruel, burdensome, and can last years if caregivers assist oral feeding and hydrating. Options to avoid prolonged dying are limited since advanced dementia patients cannot qualify for Medical Aid in Dying. Physicians and judges can insist on clear and convincing evidence that the patient wants to die-which many advance directives cannot provide. Proxies/agents' substituted judgment may not be concordant with patients' requests. While advance directives can be patients' last resort to attain a peaceful and timely dying consistent with their lifelong values, success depends on their being effective and acceptable. A single flaw can provide opponents justification to refuse the directive's requests to cease assisted feeding.Aim: This article considers 24 common advance directive flaws in four categories. Process flaws focus on how patients express their end-of-life wishes. Content flaws reflect drafters' selection of conditions and interventions, and how they are described. Inherent flaws can make advance directives unacceptable to authorities concerned about premature dying. Strategies are needed to compel physicians to write needed orders and to prevent third parties from sabotaging these orders after they are  implemented. The article includes excerpts from "dementia-specific" directives or supplements that exemplify each flaw-mostly from the US and Europe. No directive critiqued here included an effective strategy to resolve this long-debated bioethical conflict: the past directive requests "Cease assisted feeding" but the incapacitated patient apparently expresses the desire to "Continue assisted feeding." Some opponents to the controversial request, cease assisted feeding, use this conflict as a conceptual wedge to practice hard paternalism. This article proposes a protocol to prevent this conflict from emerging. These strategies may prevent authorities from requiring patients to fulfill authorities' additional clinical criteria as a prerequisite to honor the requests in patients directives.Conclusion: This critique of flaws may serve as a guide to drafting and to selecting effective and acceptable advance directives for dementia. It also poses several bioethical and clinical questions to those in authority: Does your paternalistic refusal to honor patients' wishes respect their self-determination? Protect vulnerable patients from harm? Force patients to endure prolonged suffering? Violate the principles of bioethics? Violate the very foundation of patient-centered care? [ABSTRACT FROM AUTHOR]

Deciding whether to stop life-saving treatment for patients receiving intensive care, and who have poor recovery prospects, is challenging. Due to patients' inability to make these decisions and the difficulties in fulfilling their wishes regarding treatment, family members often need to decide themselves. Advance care planning support has been expanding to improve the quality of end-of-life care, but its effectiveness in intensive care units is unclear. This scoping review aimed to elucidate the effectiveness of advance care planning interventions for patients entering intensive care units, and their families. The PRISMA-ScR checklist was used to report this review. We searched the databases of BNI, CINAHL, EMBASE, Ichushi-Web, PsycINFO, PubMed, The Cochrane Library, OpenGrey, and the Trip medical database for published and unpublished studies in intensive care units from January 2000 to March 2020. Studies on adult patients admitted to intensive care units were included, while studies on patients being treated for mental health conditions, terminally ill patients, new mothers, and patients in nursing homes and hospices were excluded. Three quantitative studies and one qualitative study were included in this review. Literature analysis revealed that an advance care planning intervention involving patients in intensive care units in the perioperative period and their families significantly improved their knowledge; documenting the patient's intentions helped reduce decision-making conflicts and enhanced care satisfaction. Barriers to preparing advance care planning included a lack of information and support by healthcare providers. The reviewed studies indicated that medical professionals and families could make surrogate decisions based on patients' wishes and values by supporting advance care planning. [ABSTRACT FROM AUTHOR]

A major proportion of people with Parkinson's disease (PwP) in Germany has written an advance directive (AD). Unfortunately, these ADs are unclear for PD-specific endpoints. We previously established consensus-based recommendations for disease-specific content of an AD in PwP. However, the implementation of those recommendations and the consulting of AD creation and modification in PwP remains to be evaluated. This study aimed to investigate the practical use of PD-specific recommendations for ADs in outpatient settings. A total of 87 physicians (45 general practitioners (GPs) and 42 neurologists, 10% response rate) answered a self-constructed semiquantitative questionnaire. The participants were asked to evaluate the suggested PD-specific recommendations for ADs and the supply of palliative care in the outpatient setting. Overall, the vast majority of treating physicians agreed on the usefulness of the newly constructed PD-specific recommendations. Consultations to discuss information about PD-specific ADs were scarce with short durations. Only 24% of participating physicians implemented the PD-specific recommendations in their daily practice. GPs and neurologists agreed on the benefit of disease-specific recommendations for ADs. In future, a more general integration of these recommendations in routine care might improve specific AD creation of PwP and advanced care planning. [ABSTRACT FROM AUTHOR]

Background: Advance care planning, including advance directives, is an important tool that allows patients to express their preferences for care if they are no longer able to express themselves. We developed Accordons-nous, a smartphone app that informs patients about advance care planning and advance directives, facilitates communication on these sensitive topics, and helps patients express their values and preferences for care. Objective: The first objective of this study is to conduct a usability test of this app. The second objective is to collect users' critical opinions on the usability and relevance of the tool. Methods: We conducted a usability test by means of a think-aloud method, asking 10 representative patients to complete 7 browsing tasks. We double coded the filmed sessions to obtain descriptive data on task completion (with or without help), time spent, number of clicks, and the types of problems encountered. We assessed the severity of the problems encountered and identified the modifications needed to address these problems. We evaluated the readability of the app using Scolarius, a French equivalent of the Flesch Reading Ease test. By means of a posttest questionnaire, we asked participants to assess the app's usability (System Usability Scale), relevance (Mobile App Rating Scale, section F), and whether they would recommend the app to the target groups: patients, health professionals, and patients' caring relatives. Results: Participants completed the 7 think-aloud tasks in 80% (56/70) of the cases without any help from the experimenter, in 16% (11/70) of the cases with some help, and failed in 4% (3/70) of the cases. The analysis of failures and difficulties encountered revealed a series of major usability problems that could be addressed with minor modifications to the app. Accordons-nous obtained high scores on readability (overall score of 87.4 on Scolarius test, corresponding to elementary school level), usability (85.3/100 on System Usability Scale test), relevance (4.3/5 on the Mobile App Rating Scale, section F), and overall subjective endorsement on 3 I would recommend questions (4.7/5). Conclusions: This usability test helped us make the final changes to our app before its official launch. [ABSTRACT FROM AUTHOR]

Aim: To describe healthcare professionals' accessibility and transfer of patients' and family members' end‐of‐life wishes in ACP to the palliative care unit. Design: The study used a qualitative descriptive study design. Methods: Purposive sampling was used. The data (N = 33) were collected through interviews with physicians, registered nurses, practical nurses and social workers. The data were analysed by inductive content analysis. Results: Two main categories emerged. Patients' and family members' end‐of‐life wishes documentation in relation to changing information needs was described in relation to patients' condition and care context. Transfer of patients' and family members' end‐of‐life wishes to palliative care unit included written and verbal communication. Results showed lack of implementation of ACP early, lack of implementation about the holistic interpretation of ACP into medical notes and lack of transferability of ACP into documenting systems impacting on accessibility and realization for the patient and family members at the end‐of‐life. [ABSTRACT FROM AUTHOR]

Recently amended legal regulations established the opportunity of application of advance directives for terminally ill patients in Lithuania. Provisionally, advance directives should enhance patient's rights while making complex end of life decisions, however, implications for legal and moral responsibility to empower a patient's autonomy are not clearly established yet. The article discusses the legal and ethical justification of implementation of advance directives and, in their absence, the surrogate decision making for the best interests of the patient and the best representation of the patient's will. The reflections of recent empirical studies indicate the importance of a patient-centered approach that can provide the hints for harmonization of the national legal system, including a supportive decision-making culture, raising public awareness and confidence, more effective professional communication, and broader public involvement into end-of-life deliberations. Analysis of legal and ethical arguments imposes the conclusion that the specific question of respect of dignity in the end of life is not just a problem of health care management or the quality of health care services, but a fundamental challenge of human rights that should be discussed at the policy decision making level. Overall, we assume that application of advance directives should be elaborated in accordance with the case-law of the European Court of Human Rights (ECHR), the ideals of welfare society, and other national laws as well as public interests. [ABSTRACT FROM AUTHOR]

Background: Little is known about advance directives (ADs) and end-of-life (EOL) care preferences among the general population in Mainland China. This study aimed to describe knowledge and attitudes of ADs and EOL care preferences, and to explore factors related to preferences for ADs among Chinese adults.Methods: The sample included 1114 adult participants in Wuhan, Mainland China. A brief message including the link to the online survey was sent to local residents who were registered at household registration management centers in Wuhan. The questionnaire included information regarding demographics, self-rated health, views on ADs and EOL care. Bivariate analyses and binary forward logistic regression were conducted to examine factors related to ADs preferences of Chinese adults.Results: The average age of the sample was 48.0 years and more than half of the sample was female. 81.8% had never heard of ADs, but 86.6% indicated that they might create one after learning what ADs were. 58% would choose hospice care if they were terminally ill whereas 48.7% of the participants wanted to die at home. 92.3% would want to know their diagnosis and prognosis if ill; however, if their family members were diagnosed with an incurable disease, 50.5% would not tell their ill family member the actual diagnosis and prognosis. Those who had heard of ADs (OR = 1.567, p < 0.001), earned an associate's degree (OR = 2.448, p < 0.001) or a bachelor's degree or higher (OR = 2.382, p < 0.001), and self-rated their health as very poor/poor (OR = 1.002, p = 0.001) were more likely to be willing to make an AD than their counterparts. However, those who were single (OR = 0.149, p < 0.001) or widowed /divorced/separated (OR = 0.405, p = 0.001) were less likely to be willing to make an AD than the married ones.Conclusions: Chinese adults showed positive attitudes towards ADs. There is an urgent need to promote more educational initiatives and raise awareness on the importance of ADs. It is important to develop more policies and legislation about ADs to improve the quality of EOL care in Mainland China. [ABSTRACT FROM AUTHOR]

Purpose The "Act on Hospice and Palliative Care and Decisions on Life-Sustaining Treatment for Patients at the End-of-Life" was enacted on February 3, 2016 and went into effect on February 4, 2018 in Korea. This study reviewed the first year of determination to life-sustaining treatment (LST) through data analysis of the National Agency for Management of Life-Sustaining Treatment. Materials and Methods The National Agency for Management of LST provided data between February 4, 2018 and January 31, 2019 anonymously from 33,549 patients. According to the forms patients were defined as either elf-determinants or family-determinants. Results The median age of the patient was 73 and the majority was male (59.9%). Cancer patients were 59% and self-determinants were 32.1%. Cancer patients had a higher rate of self-determinants than non-cancer (47.3% vs. 10.1%). Plan for hospice service was high in cancer patients among self-determinants (81.0% vs. 37.5%, p < 0.001). In comparison to family-determinants, self-determinants were younger (median age, 67 years vs. 75 years; p < 0.001) and had more cancer diagnosis (87.1% vs. 45.9%, p < 0.001). Decision of withholding or withdrawing of LSTs in cancer patients was higher than non-cancer patients in four items. Conclusion Cancer patients had a higher rate in self-determination and withholding or withdrawing of LSTs than non-cancer patients. Continued revision of the law and education of the public will be able to promote withdrawing or withholding the futile LSTs in patients at end-of-life. Further study following the revision of the law should be evaluated to change of end-of-life care. [ABSTRACT FROM AUTHOR]