Patients' Experiences of Participation in High-Security, Forensic Psychiatric Care.

The role of patient participation in forensic psychiatric care is unclear, but has been emphasised as important in recent research. This study aims to describe patients' lived experiences of participation in high-security, forensic psychiatric settings. Sixteen patient interviews were performed in this phenomenological study and analysed with a Reflective Lifeworld Research approach (RLR). Results show that participation must be understood in relation to its opposite construct, non-participation. Participation can thus be explained as situations where non-participation is less visible. Actions to develop the training of patient-staff interactions for forensic psychiatric staff to promote patient participation are called for.

Sustainability principle for the ethics of healthcare resource allocation.

We propose a principle of sustainability to complement established principles used for justifying healthcare resource allocation. We argue that the application of established principles of equal treatment, need, prognosis and cost-effectiveness gives rise to what we call negative dynamics: a gradual depletion of the value possible to generate through healthcare. These principles should therefore be complemented by a sustainability principle, making the prospect of negative dynamics a further factor to consider, and possibly outweigh considerations highlighted by the other principles. We demonstrate how this principle may take different forms, and show that a commitment to sustainability is supported by considerations internal to the ethical principles already guiding healthcare resource allocation. We also consider two objections. The first of these, we argue, is either based on implausible assumptions or begs the question, whereas the second can be adequately accommodated by the principle we propose.

Digital contact tracing and exposure notification: ethical guidance for trustworthy pandemic management.

There is growing interest in contact tracing apps (CT apps) for pandemic management. It is crucial to consider ethical requirements before, while, and after implementing such apps. In this paper, we illustrate the complexity and multiplicity of the ethical considerations by presenting an ethical framework for a responsible design and implementation of CT apps. Using this framework as a starting point, we briefly highlight the interconnection of social and political contexts, available measures of pandemic management, and a multi-layer assessment of CT apps. We will discuss some trade-offs that arise from this perspective. We then suggest that public trust is of major importance for population uptake of contact tracing apps. Hasty, ill-prepared or badly communicated implementations of CT apps will likely undermine public trust, and as such, risk impeding general effectiveness.

[Covid-19: An ad hoc public health ethics consultation]. / Covid-19: Eine Ad hoc Public-Health-Ethikberatung.

In this paper we describe the process and content of our ad hoc public health ethics consultation for a Bavarian health authority in relation to Covid-19.

Correction to: Managing pollution from antibiotics manufacturing: charting actors, incentives and disincentives.

Following publication of the original article [1], the author explained that there are multiple errors in the original article.

Managing pollution from antibiotics manufacturing: charting actors, incentives and disincentives.

BACKGROUND: Emissions of high concentrations of antibiotics from manufacturing sites select for resistant bacteria and may contribute to the emergence of new forms of resistance in pathogens. Many scientists, industry, policy makers and other stakeholders recognize such pollution as an unnecessary and unacceptable risk to global public health. An attempt to assess and reduce such discharges, however, quickly meets with complex realities that need to be understood to identify effective ways to move forward. This paper charts relevant key actor-types, their main stakes and interests, incentives that can motivate them to act to improve the situation, as well as disincentives that may undermine such motivation. METHODS: The actor types and their respective interests have been identified using research literature, publicly available documents, websites, and the knowledge of the authors. RESULTS: Thirty-three different actor-types were identified, representing e.g. commercial actors, public agencies, states and international institutions. These are in complex ways connected by interests that sometimes may conflict and sometimes pull in the same direction. Some actor types can act to create incentives and disincentives for others in this area. CONCLUSIONS: The analysis demonstrates and clarifies the challenges in addressing industrial emissions of antibiotics, notably the complexity of the relations between different types of actors, their international dependency and the need for transparency. The analysis however also suggests possible ways of initiating incentive-chains to eventually improve the prospects of motivating industry to reduce emissions. High-resource consumer states, especially in multinational cooperation, hold a key position to initiate such chains.

Cutting red tape to manage public health threats: An ethical dilemma of expediting antibiotic drug innovation.

Antibiotic resistance, arising when bacteria develop defences against antibiotics, is creating a public health threat of massive proportions. This raises challenging questions for standard notions in bioethics when suitable policy is to be characterized and justified. We examine the particular proposal of expediting innovation of new antibiotics by cutting various forms of regulatory 'red tape' in the standard system for the clinical introduction of new drugs. We find strong principled reasons in favour of such a lowering of the ethical standards of research and the clinical introduction of new antibiotic formulas. However, this support is undermined by pragmatic challenges owing to expected responses from stakeholders, creating uncertainty about which policies could actually be effectively implemented. We describe an underlying dilemma on how to rationally justify compromises between ideal ethical justification and pragmatic risks that needs to be further addressed in this light. We suggest a solution to this dilemma related to proposals of expediting antibiotic drug innovation.

Health-related Research Ethics and Social Value: Antibiotic Resistance Intervention Research and Pragmatic Risks.

We consider the implications for the ethical evaluation of research programs of two fundamental changes in the revised research ethical guideline of the Council for International Organizations of Medical Sciences. The first is the extension of scope that follows from exchanging "biomedical" for "health-related" research, and the second is the new evaluative basis of "social value," which implies new ethical requirements of research. We use the example of antibiotic resistance interventions to explore the need to consider the instances of what we term the pragmatic risks of such interventions to evaluate the social value of certain kinds of health-related research. These (pragmatic) risks severely threaten the social value of interventions in every area where human and social responses significantly impact on their effectiveness. Thus, the social value of health-related research needed to demonstrate its effectiveness depends on the extent and successful management of such risks. Research designed to take into account the management of pragmatic risks also gives rise to similar types of risks, and the potential for social value in light of those risks needs to be considered in ethical reviews based on the new guidelines. We argue that, to handle this new expanded task, the international system of research ethical review addressed by the guidelines needs institutional development.

Person Centered Care and Personalized Medicine: Irreconcilable Opposites or Potential Companions?

In contrast to standardized guidelines, personalized medicine and person centered care are two notions that have recently developed and are aspiring for more individualized health care for each single patient. While having a similar drive toward individualized care, their sources are markedly different. While personalized medicine stems from a biomedical framework, person centered care originates from a caring perspective, and a wish for a more holistic view of patients. It is unclear to what extent these two concepts can be combined or if they conflict at fundamental or pragmatic levels. This paper reviews existing literature in both medicine and related philosophy to analyze closer the meaning of the two notions, and to explore the extent to which they overlap or oppose each other, in theory or in practice, in particular regarding ethical assumptions and their respective practical implications.

Conscientious refusal in healthcare: the Swedish solution.

The Swedish solution to the legal handling of professional conscientious refusal in healthcare is described. No legal right to conscientious refusal for any profession or class of professional tasks exists in Sweden, regardless of the religious or moral background of the objection. The background of this can be found in strong convictions about the importance of public service provision and related civic duties, and ideals about rule of law, equality and non-discrimination. Employee's requests to change work tasks are handled on a case-by-case basis within the frames of labour law, ensuring full voluntariness, and also employer's privilege regarding the organisation and direction of work, and duties of public institutions to provide services. Two complicating aspects of this solution related to the inclusion of 'alternative medical' service providers in a national health service, and professional insistence on conscientious refusal rights to accept legalised assisted dying are discussed. The latter is found to undermine the pragmatic reasons behind recent attempts by prolife groups to challenge the Swedish solution related to legal abortion in courts.

The Legal Ethical Backbone of Conscientious Refusal.

This article analyzes the idea of a legal right to conscientious refusal for healthcare professionals from a basic legal ethical standpoint, using refusal to perform tasks related to legal abortion (in cases of voluntary employment) as a case in point. The idea of a legal right to conscientious refusal is distinguished from ideas regarding moral rights or reasons related to conscientious refusal, and none of the latter are found to support the notion of a legal right. Reasons for allowing some sort of room for conscientious refusal for healthcare professionals based on the importance of cultural identity and the fostering of a critical atmosphere might provide some support, if no countervailing factors apply. One such factor is that a legal right to healthcare professionals' conscientious refusal must comply with basic legal ethical tenets regarding the rule of law and equal treatment, and this requirement is found to create serious problems for those wishing to defend the idea under consideration. We conclude that the notion of a legal right to conscientious refusal for any profession is either fundamentally incompatible with elementary legal ethical requirements, or implausible because it undermines the functioning of a related professional sector (healthcare) or even of society as a whole.

Individual responsibility as ground for priority setting in shared decision-making.

INTRODUCTION: Given healthcare resource constraints, voices are being raised to hold patients responsible for their health choices. In parallel, there is a growing trend towards shared decision-making, aiming to empower patients and give them more control over healthcare decisions. More power and control over decisions is usually taken to mean more responsibility for them. The trend of shared decision-making would therefore seem to strengthen the case for invoking individual responsibility in the healthcare priority setting. OBJECTIVE: To analyse whether the implementation of shared decision-making would strengthen the argument for invoking individual responsibility in the healthcare priority setting using normative analysis. RESULTS AND CONCLUSIONS: Shared decision-making does not constitute an independent argument in favour of employing individual responsibility since these notions rest on different underlying values. However, if a health system employs shared decision-making, individual responsibility may be used to limit resource implications of accommodating patient preferences outside professional standards and goals. If a healthcare system employs individual responsibility, high level dynamic shared decision-making implying a joint deliberation resulting in a decision where both parties are willing to revise initial standpoints may disarm common objections to the applicability of individual responsibility by virtue of making patients more likely to exercise adequate control of their own actions. However, if communication strategies applied in the shared decision-making are misaligned to the patient's initial capacities, arguments against individual responsibility might, on the other hand, gain strength.

The Counseling, Self-Care, Adherence Approach to Person-Centered Care and Shared Decision Making: Moral Psychology, Executive Autonomy, and Ethics in Multi-Dimensional Care Decisions.

This article argues that standard models of person-centred care (PCC) and shared decision making (SDM) rely on simplistic, often unrealistic assumptions of patient capacities that entail that PCC/SDM might have detrimental effects in many applications. We suggest a complementary PCC/SDM approach to ensure that patients are able to execute rational decisions taken jointly with care professionals when performing self-care. Illustrated by concrete examples from a study of adolescent diabetes care, we suggest a combination of moral and psychological considerations to support the claim that standard PCC/SDM threatens to systematically undermine its own goals. This threat is due to a tension between the ethical requirements of SDM in ideal circumstances and more long-term needs actualized by the context of self-care handled by patients with limited capacities for taking responsibility and adhere to their own rational decisions. To improve this situation, we suggest a counseling, self-care, adherence approach to PCC/SDM, where more attention is given to how treatment goals are internalized by patients, how patients perceive choice situations, and what emotional feedback patients are given. This focus may involve less of a concentration on autonomous and rational clinical decision making otherwise stressed in standard PCC/SDM advocacy.

A new ethical landscape of prenatal testing: individualizing choice to serve autonomy and promote public health: a radical proposal.

A new landscape of prenatal testing (PNT) is presently developing, including new techniques for risk-reducing, non-invasive sampling of foetal DNA and drastically enhanced possibilities of what may be rapidly and precisely analysed, surrounded by a growing commercial genetic testing industry and a general trend of individualization in healthcare policies. This article applies a set of established ethical notions from past debates on PNT for analysing PNT screening-programmes in this new situation. While some basic challenges of PNT stay untouched, the new development supports a radical individualization of how PNT screening is organized. This reformation is, at the same time, difficult to reconcile with responsible spending of resources in a publicly funded healthcare context. Thus, while the ethical imperative of individualization holds and applies to PNT, the new landscape of PNT provides reasons to start rolling back the type of mass-screening programmes currently established in many countries. Instead, more limited offers are suggested, based on considerations of severity of conditions and optimized to simultaneously serve reproductive autonomy and public health within an acceptable frame of priorities. The new landscape of PNT furthermore underscores the ethical importance of supporting and including people with disabilities. For the very same reason, no ban on what may be analysed using PNT in the new landscape should be applied, although private offers must, of course, conform to strict requirements of respecting reproductive autonomy and what that means in terms of counselling.

Framework for systematic identification of ethical aspects of healthcare technologies: the SBU approach.

OBJECTIVES: Assessment of ethical aspects of a technology is an important component of health technology assessment (HTA). Nevertheless, how the implementation of ethical assessment in HTA is to be organized and adapted to specific regulatory and organizational settings remains unclear. The objective of this study is to present a framework for systematic identification of ethical aspects of health technologies. Furthermore, the process of developing and adapting the framework to a specific setting is described. METHODS: The framework was developed based on an inventory of existing approaches to identification and assessment of ethical aspects in HTA. In addition, the framework was adapted to the Swedish legal and organizational healthcare context, to the role of the HTA agency and to the use of non-ethicists. The framework was reviewed by a group of ethicists working in the field as well as by a wider set of interested parties including industry, interest groups, and other potential users. RESULTS: The framework consists of twelve items with sub-questions, short explanations, and a concluding overall summary. The items are organized into four different themes: the effects of the intervention on health, its compatibility with ethical norms, structural factors with ethical implications, and long term ethical consequences of using the intervention. CONCLUSIONS: In this study, a framework for identifying ethical aspects of health technologies is proposed. The general considerations and methodological approach to this venture will hopefully inspire and present important insights to organizations in other national contexts interested in making similar adaptations.

Self-Reported Perceptions of Patients and Staff on Participation and Verbal and Social Interactions in High-Security Forensic Psychiatric Care in Sweden.

INTRODUCTION: Studies suggest that experiences of patient participation, as described by both patients and staff, are associated with a significant caring relationship of high quality. AIM: This study aimed to investigate staffs' and patients' self-reported perceptions on participation and the frequency and importance of verbal and social interactions in high-security forensic psychiatry. METHOD: The questionnaire Verbal and Social Interactions (VSI) was used together with the subscale Participation from Quality in Psychiatric Care (QPC). The study was conducted at a large forensic psychiatric clinic in Sweden. RESULTS: Staff and patients rated the frequency of VSI differently while reporting the same perceived degree of patient participation. All categories of VSI were significantly correlated with perceived level of participation with medium or small effect size for the patients. DISCUSSION: Patients' perceived participation seems to depend on verbal and social interaction within the specific categories 'Showing interest in the patients' feelings, experiences, and behavior' and 'Helping the patients establish structure and routines in their everyday life'. There was, however, a negative association for the latter. IMPLICATIONS FOR PRACTICE: The results give a better understanding of what kind of interactions that affect patients' perceived level of participation. RELEVANCE STATEMENT: Patient participant is a prioritised area for development in forensic psychiatry. The study contributes to a better understanding of what types of interactions that affect the perceived level of participation, while at the same time, it shows important similarities and differences between patient and staff perspectives.