Mental health services in the metaverse: potential and concerns.

No abstract available.

The PHERCC Matrix. An Ethical Framework for Planning, Governing, and Evaluating Risk and Crisis Communication in the Context of Public Health Emergencies.

Risk and crisis communication (RCC) is a current ethical issue subject to controversy, mainly due to the tension between individual liberty (a core component of fairness) and effectiveness. In this paper we propose a consistent definition of the RCC process in public health emergencies (PHERCC), which comprises six key elements: evidence, initiator, channel, publics, message, and feedback. Based on these elements and on a detailed analysis of their role in PHERCC, we present an ethical framework to help design, govern and evaluate PHERCC strategies. The framework aims to facilitate RCC, incorporating effectiveness, autonomy, and fairness. It comprises five operational ethical principles: openness, transparency, inclusivity, understandability, and privacy. The resulting matrix helps understanding the interplay between the PHERCC process and the principles of the framework. The paper includes suggestions and recommendations for the implementation of the PHERCC matrix.

Coercion in intensive care, an insufficiently explored issue-a scoping review of qualitative narratives of patient's experiences.

Purpose: The use of coercion, in a clinical context as imposing a measure against a patient's opposition or declared will, can occur in various forms in intensive care units (ICU). One prime example of a formal coercive measure in the ICU is the use of restraints, which are applied for patients' own safety. Through a database search, we sought to evaluate patient experiences related to coercive measures. Results: For this scoping review, clinical databases were searched for qualitative studies. A total of nine were identified that fulfilled the inclusion and the CASP criteria. Common themes emerging from the studies on patient experiences included communication issues, delirium, and emotional reactions. Statements from patients revealed feelings of compromised autonomy and dignity that came with a loss of control. Physical restraints were only one concrete manifestation of formal coercion as perceived by patients in the ICU setting. Conclusion: There are few qualitative studies focusing on patient experiences of formal coercive measures in the ICU. In addition to the experience of restricted physical movement, the perception of loss of control, loss of dignity, and loss of autonomy suggests that restraining measures are just one element in a setting that may be perceived as informal coercion.

Association between the colorectal cancer screening status of primary care physicians and their patients: Evidence from the Swiss Sentinella practice-based research network.

Swiss health insurance reimburses screening for colorectal cancer (CRC) with either colonoscopy or fecal occult blood test (FOBT). Studies have documented the association between a physician's personal preventive health practices and the practices they recommend to their patients. We explored the association between CRC testing status of primary care physicians (PCP) and the testing rate among their patients. From May 2017 to September 2017, we invited 129 PCP who belonged to the Swiss Sentinella Network to disclose their CRC test status and whether they had been tested with colonoscopy or FOBT/other methods. Each participating PCP collected demographic data and CRC testing status from 40 consecutive 50- to 75-year-old patients. We analyzed data from 69 (54%) PCP 50 years or older and 2623 patients. Most PCP were men (81%); 75% were tested for CRC (67% with colonoscopy and 9% with FOBT). Mean patient age was 63; 50% were women; 43% had been tested for CRC (38%, 1000/2623 with colonoscopy and 5%, 131/2623, with FOBT or other non-endoscopic test). In multivariate adjusted regression models that clustered patients by PCP, the proportion of patients tested for CRC was higher among PCP tested for CRC than among PCP not tested (47% vs 32%; OR 1.97; 95% CI 1.36 to 2.85). Since PCP CRC testing status is associated with their patients CRC testing rates, it informs future interventions that will alert PCPs to the influence of their health decisions and motivate them to further incorporate the values and preferences of their patients in their practice.

A critical analysis of national dementia care guidances.

Adopting an ethics and human rights lens, this paper provides a critical analysis of national dementia care guidance from countries ranked highly in providing quality of care towards the end-of-life, including Australia, Ireland, New Zealand, Switzerland, Taiwan and the United Kingdom. The aim of this paper is to determine areas of consensus and disagreement among guidance and to understand current gaps in research. Overall, studied guidances showed consensus regarding patient empowerment and engagement, promoting independence, autonomy and liberty through; establishing person-centered care plans, providing ongoing care assessment, resources and support to individuals and their family/carers. Consensus was also seen in most end-of-life care issues; re-assessing care plans, rationalizing medication, and most importantly carer support and well-being. Disagreement could be found in criteria relating to decision-making after losing capacity, i.e. through appointment of case managers or a power of attorney, reducing barriers to equitable access of care, stigma and discrimination for minority and disadvantaged groups - including younger people with dementia, medicalized care strategies such as alternatives to hospitalization, covert administration, and assisted hydration and nutrition, and also in identifying an active dying phase. Potential for future development includes a greater emphasis on multidisciplinary collaborations, financial and welfare assistance, exploring the use of artificial intelligence technologies for testing and management, while also providing safeguards against such emerging technologies and therapies.

Patient narratives - a still undervalued resource for healthcare improvement.

In recent years, patient narratives have attracted increasing attention as a valuable source of insights into the subjective experience of healthcare. This paper outlines a best-practice approach to the collection, analysis, and use of patient narratives, based on current literature and on the experience of developing the Swiss Database of Individual Patient Experiences (DIPEx). The DIPEx project aims to provide a systematic and methodologically rigorous collection of patient narratives on various health situations and topics. This paper presents and details the DIPEx approach as a current standard in the field, offering a comprehensive overview and discussing the potential uses and benefits of patient narratives: improve healthcare practice, empower patients and caregivers, help structure better communication in healthcare, and contribute to medical teaching and learning.

Aneurysmal Subarachnoid Hemorrhage and Clinical Decision-Making: A Qualitative Pilot Study Exploring Perspectives of Those Directly Affected, Their Next of Kin, and Treating Clinicians.

BACKGROUND: Exploring the experience and impact of aneurysmal subarachnoid hemorrhage (aSAH) from three perspectives, that of those directly affected (AFs), their next of kin (NoK), and treating clinicians, is a way to support and empower others to make informed medical decisions. METHODS: In a Swiss neurosurgical intensive care unit (ICU), eleven semi-structured interviews were conducted as part of a Database of Individual Patient Experiences (DIPEx) pilot project and thematically analyzed. Interviews were held with two clinicians, five people experiencing aSAH, and four NoK 14-21 months after the bleeding event. RESULTS: Qualitative analysis revealed five main themes from the perspective of clinicians: emergency care, diagnosis and treatment, outcomes, everyday life in the ICU, and decision-making; seven main themes were identified for AFs and NoK: the experience of the aSAH, diagnosis and treatment, outcomes, impact on loved ones, identity, faith, religion and spirituality, and decision-making. Perspectives on decision-making were compared, and, whereas clinicians tended to focus their attention on determining treatment, AFs and NoK valued participation in shared decision-making processes. CONCLUSIONS: Overall, aSAH was perceived as a life-threatening event with various challenges depending on severity. The results suggest the need for tools that aid decision-making and better prepare AFs and NoK using accessible means and at an early stage.

From text to interaction: The digital advance directive method for advance directives.

Advance directives allow people to specify individual treatment preferences in case of decision-making incapacity involving decisions of utmost importance. There are many tools that provide information on the topic, digital forms for structured data input, or platforms that support data storage and availability. Yet, there is no tool supporting the innermost process of an advance directive: decision making itself. To address this issue, we developed a visual-interactive, semi-quantitative method for generating digital advance directives (DiADs) that harnesses the potential of digitalization in healthcare. In this article, we describe the DiAD method and its app lined with the exemplary narrative of user Mr S. linking the theory to an exemplary use case. The DiAD method is intended to lower barriers and increase comfort in creating an advance directive by shifting the focus from heavily text-based processes to visual representation and interaction, that is, from text to reflection.

Ethics of the algorithmic prediction of goal of care preferences: from theory to practice.

Artificial intelligence (AI) systems are quickly gaining ground in healthcare and clinical decision-making. However, it is still unclear in what way AI can or should support decision-making that is based on incapacitated patients' values and goals of care, which often requires input from clinicians and loved ones. Although the use of algorithms to predict patients' most likely preferred treatment has been discussed in the medical ethics literature, no example has been realised in clinical practice. This is due, arguably, to the lack of a structured approach to the epistemological, ethical and pragmatic challenges arising from the design and use of such algorithms. The present paper offers a new perspective on the problem by suggesting that preference predicting AIs be viewed as sociotechnical systems with distinctive life-cycles. We explore how both known and novel challenges map onto the different stages of development, highlighting interdisciplinary strategies for their resolution.

The Use and Ethics of Digital Twins in Medicine.

Digital Health Technologies (DHTs) are currently the subject of much debate both in terms of their technological frontiers as well as their ethical, legal and societal implications (ELSI). Regulation of such technologies as medical devices currently lacks behind their level of adoption. Digital Twins are the next evolution step of such DHTs and provide an opportunity to anticipate and act on ELSI before adoption again leaps before the necessary review. This paper introduces the concept and use cases of digital twins in medicine, then frames the debate through the lens of related technologies, machine learning and personalized medicine, and maps ethical challenges stemming from those. Finally, we lay out how digital twins may change and challenge the future practice of medicine.

'VaxTax': a follow-up proposal for a global vaccine pandemic response fund.

Equal access to vaccines has been one of the key ethical challenges during the COVID-19 pandemic. Most scholars consider the massive purchase and hoarding of vaccines by high-income countries, especially at the beginning of the pandemic, to be unjust towards the vulnerable living in low-income countries. A recent proposal by Andreas Albertsen of a vaccine tax has been put forward to remedy this problem. Under such a scheme, high-income countries would pay a contribution, conceptualised as a vaccine tax, dedicated to buying vaccines and distributing them to low and middle-income countries. Proceeding from this proposal, we critically assess the feasibility of a vaccine tax and suggest how to conceptualise and implement a vaccine tax in practice. We present our 'VaxTax model' and explore its comparative advantages and disadvantages while considering other possible measures to address the global vaccine access problem, also in view of future pandemics and disease outbreaks.

An Ethical Framework for Incorporating Digital Technology into Advance Directives: Promoting Informed Advance Decision Making in Healthcare.

Despite the presumed value of advance directives, research to demonstrate impact has shown mixed results. For advance directives to serve their role promoting patient autonomy, it is important that patients be informed decision makers. The capacity to make decisions depends upon understanding, appreciation, reasoning, and communication. Advance directives are in part faulty because these elements are often limited. The present paper explores how the application of digital technology could be organized around a framework promoting these four elements. Given the state of digital advancements, there is great potential for advance directives to be meaningfully enhanced. The beneficial effects of incorporating digital technology would be maximized if they were organized around the aim of making advance directives not only documents for declaring preferences but also ethics-driven tools with decision aid functionality. Such advance directives would aid users in making decisions that involve complex factors with potentially far-reaching impact and would also elucidate the users' thought processes to aid those tasked with interpreting and implementing decisions based on an advance directive. Such advance directives might have embedded interactive features for learning; access to content that furthers one's ability to project oneself into possible, future scenarios; review of the logical consistency of stated preferences; and modes for effective electronic sharing. Important considerations include mitigating the introduction of bias depending on the presentation of information; optimizing interfacing with surrogate decision makers and treating clinicians; and prioritizing essential components to respect time constraints.

[Shared Decision-Making as an Imperative of Modern Medicine?] / Gemeinsame Entscheidungsfindung als Imperativ der modernen Medizin?

Shared Decision-Making as an Imperative of Modern Medicine? Abstract. Shared Decision-Making (SDM) is a normative model of decision-making in the clinical context, in which physicians and patients assess alternative treatment options and jointly take value-based decisions based on the preferences of patients. It is important that the exchange of information is free and uncoerced and that the advantages and disadvantages of different treatment options are carefully considered. The aim of this article is to reconstruct SDM historically and conceptually and to embed the model in a normative theory of patient autonomy. Furthermore, we define the scope of SDM in clinical practice by pointing to the limits of the SDM model. Our aim is to determine under what conditions patients and doctors take decisions together, what role doctors shall play, and when patients potentially participate too much or too little in the decision-making process.

[Patient Decision Aids for Values Clarification and Preference Elicitation - Challenges and Developments]. / Patienten-Entscheidungshilfen zur Werteklärung und Präferenzerhebung.

Patient Decision Aids for Values Clarification and Preference Elicitation - Challenges and Developments Abstract. Shared decision-making is especially appropriate when the available evidence does not indicate which medical intervention is the better option, so that the final decision depends on the patient's personal values and preferences. The process of value clarification and preference elicitation can be time-consuming and cognitively and emotionally demanding for patients. Increasingly, decision aids provide tasks (e.g., on benefit-harm trade-offs) to help patients work through this process, better prepare for medical consultations, and make values-congruent medical decisions with their physicians. Most clinically validated decision aids are paper-based flyers and educational brochures. There are also computer-, audio-, video-, or web-based decision aids. The web-based aids make little use of the potential of interactive technologies, despite the known benefits of these technologies. The aims of this paper are to provide an overview of decision aids for and challenges of values clarification and preference elicitation and to highlight some developments in interactive web-based technologies that might facilitate values clarification and preference elicitation.