Assisted suicide and the discrimination argument: Can people with mental illness fulfill beneficence- and autonomy-based eligibility criteria?

According to the "discrimination argument," it would be discriminatory and hence impermissible to categorically exclude people with mental illness (PMI) from access to assisted suicide (AS) if AS is accessible to people with somatic illnesses. In objection to this, it could be argued that excluding PMI is not discriminatory, but rather based on their inability to meet certain eligibility criteria for AS. Which criteria are deemed necessary depends on the approach taken to justifying AS. In this article, we describe two distinct ethical approaches to justifying AS and the eligibility criteria they entail and examine whether PMI can fulfill these criteria. A widespread "joint" approach based on beneficence and autonomy assumes that AS is justified when it alleviates the severe and irremediable suffering of a person who autonomously requests AS. An alternative, exclusively autonomy-based approach assumes that providing AS is justified when a person's request is autonomous, regardless of whether AS is in her best interests. The latter approach underlies an important judgment of the German Federal Constitutional Court from 2020. We argue that PMI can in principle fulfill both beneficence- and autonomy-based eligibility criteria for AS, and that a blanket exclusion of all PMI from AS is thus discriminatory on either approach. However, depending on which approach is taken, there are differences regarding the subgroups of PMI that would be eligible for AS. Whether the exclusion of specific PMI is discriminatory therefore depends on how we understand and justify AS.

Increasing efficiency and well-being? a systematic review of the empirical claims of the double-benefit argument in socially assistive devices.

BACKGROUND: Socially assistive devices (care robots, companions, smart screen assistants) have been advocated as a promising tool in elderly care in Western healthcare systems. Ethical debates indicate various challenges. One of the most prevalent arguments in the debate is the double-benefit argument claiming that socially assistive devices may not only provide benefits for autonomy and well-being of their users but might also be more efficient than other caring practices and might help to mitigate scarce resources in healthcare. Against this background, we used a subset of comparative empirical studies from a comprehensive systematic review on effects and perceptions of human-machine interaction with socially assistive devices to gather and appraise all available evidence supporting this argument from the empirical side. METHODS: Electronic databases and additional sources were queried using a comprehensive search strategy which generated 9851 records. Studies were screened independently by two authors. Methodological quality of studies was assessed. For 39 reports using a comparative study design, a narrative synthesis was performed. RESULTS: The data shows positive evidential support to claim that some socially assistive devices (Paro) might be able to contribute to the well-being and autonomy of their users. However, results also indicate that these positive findings may be heavily dependent on the context of use and the population. In addition, we found evidence that socially assistive devices can have negative effects on certain populations. Evidence regarding the claim of efficiency is scarce. Existing results indicate that socially assistive devices can be more effective than standard of care but are far less effective than plush toys or placebo devices. DISCUSSION: We suggest using the double-benefit argument with great caution as it is not supported by the currently available evidence. The occurrence of potentially negative effects of socially assistive devices requires more research and indicates a more complex ethical calculus than suggested by the double-benefit argument.

Smartphone Apps for Containing the COVID-19 Pandemic in Germany: Qualitative Interview Study With Experts Based on Grounded Theory.

BACKGROUND: Smartphone apps, including those for digital contact tracing (DCT), played a crucial role in containing infections during the COVID-19 pandemic. Their primary function is to generate and disseminate information to disrupt transmissions based on various events, such as encounters, vaccinations, locations, or infections. Although the functionality of these apps has been extensively studied, there is still a lack of qualitative research addressing critical issues. OBJECTIVE: We will demonstrate that the use of DCT presents a challenge due to the tension between continuous health monitoring and uncertainties related to transparency and user sovereignty. On one hand, DCT enables the monitoring of various risk factors, including data-based calculations of infection probabilities. On the other hand, continuous risk management is intertwined with several uncertainties, including the unclear storage of personal data, who has access to it, and how it will be used in the future. METHODS: We focus on the German "Corona-Warn-App" and support our argument with empirical data from 19 expert interviews conducted between 2020 and 2021. The interviews were conducted using a semistructured questionnaire and analyzed according to the principles of grounded theory. RESULTS: Our data underscores 3 dimensions: transparency, data sovereignty, and the east-west divide. While transparency is considered an essential foundation for establishing trust in the use of DCT by providing a sense of security, data sovereignty is seen as a high value during the pandemic, protecting users from an undesired loss of control. The aspect of the east-west divide highlights the idea of incorporating sociocultural values and standards into technology, emphasizing that algorithms and data-driven elements, such as distance indicators, encounters, and isolations, are also influenced by sociocultural factors. CONCLUSIONS: The effective use of DCT for pandemic containment relies on achieving a balance between individual control and technological prevention. Maximizing the technological benefits of these tools is crucial. However, users must also be mindful of the information they share and maintain control over their shared data.

Research ethics in practice: An analysis of ethical issues encountered in qualitative health research with mental health service users and relatives.

The ethics review of qualitative health research poses various challenges that are due to a mismatch between the current practice of ethics review and the nature of qualitative methodology. The process of obtaining ethics approval for a study by a research ethics committee before the start of a research study has been described as "procedural ethics" and the identification and handling of ethical issues by researchers during the research process as "ethics in practice." While some authors dispute and other authors defend the use of procedural ethics in relation to qualitative health research, there is general agreement that it needs to be supplemented with ethics in practice. This article aims to provide an illustration of research ethics in practice by reflecting on the ways in which we identified and addressed ethical and methodological issues that arose in the context of an interview study with mental health service users and relatives. We describe the challenges we faced and the solutions we found in relation to the potential vulnerability of research participants, the voluntariness of consent, the increase of participant access and the heterogeneity of the sample, the protection of privacy and internal confidentiality, and the consideration of personal and contextual factors.

Opportunities and challenges of self-binding directives: A comparison of empirical research with stakeholders in three European countries.

BACKGROUND: Self-binding directives (SBDs) are psychiatric advance directives that include a clause in which mental health service users consent in advance to involuntary hospital admission and treatment under specified conditions. Medical ethicists and legal scholars identified various potential benefits of SBDs but have also raised ethical concerns. Until recently, little was known about the views of stakeholders on the opportunities and challenges of SBDs. AIMS: This article aims to foster an international exchange on SBDs by comparing recent empirical findings on stakeholders' views on the opportunities and challenges of SBDs from Germany, the Netherlands, and the United Kingdom. METHOD: Comparisons between the empirical findings were drawn using a structured expert consensus process. RESULTS: Findings converged on many points. Perceived opportunities of SBDs include promotion of autonomy, avoidance of personally defined harms, early intervention, reduction of admission duration, improvement of the therapeutic relationship, involvement of persons of trust, avoidance of involuntary hospital admission, addressing trauma, destigmatization of involuntary treatment, increase of professionals' confidence, and relief for proxy decision-makers. Perceived challenges include lack of awareness and knowledge, lack of support, undue influence, inaccessibility during crisis, lack of cross-agency coordination, problems of interpretation, difficulties in capacity assessment, restricted therapeutic flexibility, scarce resources, disappointment due to noncompliance, and outdated content. Stakeholders tended to focus on practical challenges and did not often raise fundamental ethical concerns. CONCLUSIONS: Stakeholders tend to see the implementation of SBDs as ethically desirable, provided that the associated challenges are addressed.

Socially Assistive Devices in Healthcare-a Systematic Review of Empirical Evidence from an Ethical Perspective.

Socially assistive devices such as care robots or companions have been advocated as a promising tool in elderly care in Western healthcare systems. Ethical debates indicate various challenges. An important part of the ethical evaluation is to understand how users interact with these devices and how interaction influences users' perceptions and their ability to express themselves. In this review, we report and critically appraise findings of non-comparative empirical studies with regard to these effects from an ethical perspective.Electronic databases and other sources were queried using a comprehensive search strategy generating 9851 records. Studies were screened independently by two authors. Methodological quality of studies was assessed. For 22 reports on 21 datasets using a non-comparative design a narrative synthesis was performed.Data shows positive findings in regard to attitudes and emotional reactions of users. Varying perception of a social relation and social presence are the most commonly observed traits of interaction. Users struggle with understanding technical complexities while functionality of the devices is limited. This leads to a behavioral alignment of users towards the requirements of the devices to be able to make use of them.This evidence adds to three important ethical debates on the use of socially assistive devices in healthcare in regard to (1) reliability of existing empirical evidence to inform normative judgements, (2) ethical significance of the social presence of devices and (3) user autonomy in regard to behavioral alignment.

The Content of Psychiatric Advance Directives: A Systematic Review.

OBJECTIVE: Psychiatric advance directives (PADs) enable users of mental health services to express their treatment preferences for future mental health crises. PAD completion rates remain low despite high rates of interest among service users and empirically confirmed benefits of their use. A systematic review of service users' preferences regarding the content of PADs could be a valuable resource for clinicians and policy makers and might help reduce barriers to PAD implementation. METHODS: A systematic review concordant with PRISMA guidelines was conducted. CINAHL, Cochrane, EMBASE, PsycINFO, MEDLINE, PubMed, SCOPUS, and Web of Science databases were searched up to July 2, 2021. Included articles contained original empirical data on service users' preferences regarding the content of PADs or a document analysis of existing PADs. Studies were analyzed thematically, and a narrative synthesis was conducted. The Mixed Methods Appraisal Tool was used to assess the methodological quality and risk of bias of the included studies. RESULTS: The search yielded 4,047 articles, 42 of which were eligible for inclusion. Six themes emerged (most of which included subthemes): signs of crisis, general treatment approach, preferences regarding the treatment setting, treatment preferences, coercion, and social instructions. CONCLUSIONS: The concern that PADs may be unclear or incompatible with practice standards was not confirmed. Service users generally included clear, comprehensible, and clinically relevant information in their PADs, often providing underlying reasons for their preferences. These reasons were related to previous adverse effects of medication and personal experiences with hospital admissions.

Mental Health Service Users' Perspectives on Psychiatric Advance Directives: A Systematic Review.

OBJECTIVE: Psychiatric advance directives (PADs) are documents that allow users of mental health services to express their preferences for treatment in future mental health crises. To increase the use of PADs in psychiatric practice, it is helpful to consider how service users view PADs and the factors that facilitate or hinder PAD creation and implementation. A systematic review of the empirical literature on this topic may help inform evidence-based policy making. METHODS: A systematic review concordant with PRISMA guidelines was conducted. Relevant electronic databases were searched up to July 2, 2021. Articles containing original empirical data on service users' perspectives on PADs were included. Data were analyzed thematically, tabulated, and narratively synthesized. RESULTS: Fifty-three articles were identified and included. The following categories were identified: general preferences regarding factors such as legal force and revocability; benefits of PADs at the personal, treatment-related, and social levels; challenges and barriers concerning PAD creation and application; and possible and experienced facilitators of PAD creation. CONCLUSIONS: Users of mental health services are highly interested in PADs and regard them as tools to improve their involvement in care. They generally prefer legally binding PADs that can be revoked only when users are competent to consent. Barriers reported by service users were mainly related to the creation and application of PADs, and support in PAD creation was the most important facilitator identified. The involvement of mental health professionals in creating PADs appears essential to realize the benefits of PADs and to reduce barriers to their use.

Opportunities and risks of self-binding directives: A qualitative study involving stakeholders and researchers in Germany.

Purpose: Self-binding directives (SBDs) are a special type of psychiatric advance directive in which mental health service users can consent in advance to involuntary hospital admission and involuntary treatment during future mental health crises. This study presents opportunities and risks of SBDs reported by users with bipolar disorder, family members of people with bipolar disorder, professionals working with people with bipolar disorder and researchers with expertise in mental health ethics and law. Methods: Seventeen semi-structured interviews with users, family members and professionals, and one focus group with five researchers were conducted. The data was analyzed using qualitative content analysis. Results: Six opportunities and five risks of SBDs were identified. The opportunities were promotion of autonomy and self-efficacy of users, relief of responsibility for family members, early intervention, reduction of (perceived) coercion, positive impact on the therapeutic relationship and enhancement of professionals' confidence in decision-making. The risks were problems in the assessment of mental capacity, inaccurate information or misinterpretation, increase of coercion through misuse, negative impact on the therapeutic relationship due to noncompliance with SBDs, and restricted therapeutic flexibility and less reflection on medical decision-making. Stakeholders tended to think that the opportunities of SBDs outweigh their risks, provided that appropriate control and monitoring mechanisms are in place, support is provided during the drafting process and the respective mental healthcare setting is sufficiently prepared to implement SBDs in practice. Conclusions: The fact that stakeholders consider SBDs as an opportunity to improve personalized crisis care for people with bipolar disorder indicates that a debate about the legal and clinical implementation of SBDs in Germany and beyond is necessary.

[The combined supported decision making model : A template for an ethically justifiable implementation of Article 12 of the UN Convention on the Rights of Persons with Disabilities in psychiatry]. / Das kombinierte Modell der Entscheidungsassistenz : Ein Mittel zur ethisch vertretbaren Umsetzung von Artikel 12 der UN-Behindertenrechtskonvention in der Psychiatrie.

BACKGROUND: The interpretation of Article 12 of the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) by the UN Committee on the Rights of Persons with Disabilities led to a controversy over the implementation of the article in psychiatry. OBJECTIVE: How can Article 12 CRPD be implemented in psychiatry in an ethically justifiable way? MATERIAL AND METHOD: An empirically and legally informed conceptual and ethical analysis was carried out. RESULTS: The suggested combined supported decision making model ensures the recognition of people with mental disorders as persons before the law, their equal treatment in the informed consent process and the provision of supported decision making. According to this model, coercive treatment can only be carried out in accordance with the will and preferences of the person and is subject to further conditions of proportionality and review by an independent body. CONCLUSION: The combined supported decision making model makes an ethically justifiable implementation of Article 12 CRPD possible in psychiatry.

Framework for evaluation research on clinical ethical case interventions: the role of ethics consultants.

Evaluation of clinical ethical case consultations has been discussed as an important research task in recent decades. A rigid framework of evaluation is essential to improve quality of consultations and, thus, quality of patient care. Different approaches to evaluate those services appropriately and to determine adequate empirical endpoints have been proposed. A key challenge is to provide an answer to the question as to which empirical endpoints-and for what reasons-should be considered when evaluating the quality of a service. In this paper, we argue for an approach that adopts the role of ethics consultants as its point of departure. In a first step, we describe empirical and ethical characteristics of evaluating clinical ethical case. We show that the mode of action and the explicit normative character of the interventions constitute two characteristics which pose challenges to the selection of appropriate quality criteria and require special attention. In a second step, we outline the way in which an analysis of the role of ethics consultants in the context of a clinical ethical case consultation services can account for the existing challenges by linking empirically measurable endpoints with normative theory. Finally, we discuss practical implications of our model for evaluation research.

Supported Decision-Making in Persons With Dementia: Development of an Enhanced Consent Procedure for Lumbar Puncture.

The right to make autonomous decisions is enshrined in law. However, the question how persons with cognitive deficits can be enabled to make autonomous decisions has not been satisfactorily addressed. In particular, the concept of supported decision-making and its implementation into practice has been poorly explored for persons with dementia (PwD).This article describes the empirical development and implementation of support tools to enhance informed consent processes (so called enhanced consent procedures/ECP) for PwD on whether to undergo lumbar puncture. In the end of the process of pilot testing and further development of the tools, the following tools were defined: (1) Standardized Interview Structure, (2) Elaborated Plain Language, (3) Ambience and Room Design, (4) Keyword Lists, (5) Priority Cards, (6) Visualization, and (7) Simplified Written Informed Consent (Patient Information), as well as the general attitude (8) Person-Centered Attitude of the facilitator. As the development, implementation and evaluation of ECP tools is one objective of the transnational ENSURE project, we also include an overview of future empirical procedures. So far, our findings can serve as a selection of possibilities to support PwD in decision-making and help practitioners achieve an appropriate balance between the autonomy and protection of PwD in complex decision-making situation. Future studies should address the question if the proposed set of tools is effective to enhance informed consent processes in PwD.

Types of Ethical Problems and Expertise in Clinical Ethics Consultation in Psychiatry - Insights From a Qualitative Empirical Ethics Study.

Background: Ethics consultation has been advocated as a valuable tool in ethically challenging clinical situations in healthcare. It is paramount for the development and implementation of clinical ethics support services (CESS) in psychiatry that interventions can address the moral needs of mental health professionals adequately and communicate the nature of the services clearly. This study explores types of ethical problems and concepts of ethical expertise as core elements of CESS in mental healthcare with the aim of contributing to the further development of ethical support in psychiatry. Methods: We conducted 13 semi-structured interviews with mental health professionals and CESS members and triangulated them with four non-participant observations of ethical case consultations in psychiatry. Data were analyzed according to principles of grounded theory and are discussed from a normative perspective. Results: The analysis of the empirical data reveals a typology of three different ethical problems professionals want to refer to CESS: (1) Dyadic problems based on the relationship between patients and professionals, (2) triangular problems, where a third party is involved and affected as a side effect, and (3) problems on a systemic level. However, CESS members focus largely on types (1) and (2), while the third remains unrecognized or members do not feel responsible for these problems. Furthermore, they reflect a strong inner tension connected to their role as ethical experts which can be depicted as a dilemma. On the one hand, as ethically trained people, they reject the idea that their judgments have expert status. On the other hand, they feel that mental health professionals reach out for them to obtain guidance and that it is their responsibility to offer it. Conclusion: CESS members and professionals in mental healthcare have different ideas of the scope of responsibility of CESS. This contains the risk of misunderstandings and misconceptions and may affect the quality of consultations. It is necessary to adapt concepts of problem solving to practitioners' needs to overcome these problems. Secondly, CESS members struggle with their role as ethical experts. CESS members in psychiatry need to develop a stable professional identity. Theoretical clarification and practical training are needed.