Practising in a post-truth world: Pandemic ethics can inform patient autonomy and clinical communication.

The COVID-19 pandemic posed an unprecedented challenge to modern bioethical frameworks in the clinical setting. Now, as the pandemic stabilises and we learn to 'live with COVID', the medical community has a duty to evaluate its response to the challenge, and reassess our ethical reasoning, considering how we practise in the future. This article considers a number of clinical and bioethical challenges encountered by the author team and colleagues during the most severe waves of the pandemic. We argue that the changed clinical context may require reframing our ethical thought in such a manner as to adequately accommodate all parties in the clinical interaction. We argue that clinicians have become relatively disempowered by the 'infodemic', and do not necessarily have adequate skills or training to assess the scientific literature being published at an unprecedented rate. Conversely, we acknowledge that patients and families are more empowered by the infodemic, and bring this empowerment to bear on the clinical consultation. Sometimes these interactions can be unpleasant and threatening, and involve inviting clinicians to practise against best evidence or even illegally. Generally, these requests are framed within 'patient autonomy' (which some patients or families perceive to be unlimited), and several factors may prevent clinicians from adequately navigating these requests. In this article, we conclude that embracing a framework of shared decision-making (SDM), which openly acknowledges clinical expertise and in which patient and family autonomy is carefully balanced against other bioethics principles, could serve us well going forward. One such principle is the recognition of clinician expertise as holding weight in the clinical encounter, when framed in terms of non-maleficence and beneficence. Such a framework incorporates much of our learning and experience from advising and treating patients during the pandemic.

The harm principle, personal identity and identity-relative paternalism.

Is it ethical for doctors or courts to prevent patients from making choices that will cause significant harm to themselves in the future? According to an important liberal principle the only justification for infringing the liberty of an individual is to prevent harm to others; harm to the self does not suffice.In this paper, I explore Derek Parfit's arguments that blur the sharp line between harm to self and others. I analyse cases of treatment refusal by capacitous patients and describe different forms of paternalism arising from a reductionist view of personal identity. I outline an Identity Relative Paternalistic Intervention Principle for determining when we should disallow refusal of treatment where the harm will be accrued by a future self, and consider objections including vagueness and non-identity.Identity relative paternalism does not always justify intervention to prevent harm to future selves. However, there is a stronger ethical case for doing so than is often recognised.

Urological Interconsultations to a Clinical Ethics Service in a Level-IV Hospital / Interconsultas urológicas a un Servicio de Ética Clínica en un hospital de IV nivel

Objetivo Los problemas éticos tienen una gran importancia en discusiones teóricas en la medicina, y este estudio tiene como objetivo caracterizar a los pacientes urológicos cuyos casos fueron motivos de consulta al Servicio de Ética Clínica (SEC) institucional de un hospital de IV nivel para comprender los dilemas éticos prevalentes en la práctica diaria de la urología y su abordaje. Materiales y Métodos Estudio descriptivo en el que se realizó una revisión retrospectiva de las historias clínicas de 20 pacientes urológicos interconsultados al SEC de un hospital de IV nivel. Se evaluó la frecuencia de las siguientes variables: diagnóstico, estadio funcional y clínico en el momento del diagnóstico, tiempo de evolución, tratamientos, y tipo de dilema ético motivo de la interconsulta. Resultados Desde enero de 2018, el SEC del Hospital Universitario San Ignacio ha respondido 1.123 interconsultas, y se vio un aumento significativo de las mismas en 2020 por razón de la pandemia de enfermedad por coronavirus 2019 (coronavirus disease 2019, COVID-19, en inglés). De estas interconsultas, solamente trece corresponden a pacientes con patología urológica de base, y siete, a compromiso urológico secundario. El diagnóstico más frecuente fue carcinoma de próstata en estadio IV, seguido de carcinoma urotelial avanzado. Predominó el tratamiento adecuado; solamente tres se diagnosticaron en ese momento, y no alcanzaron a recibir tratamiento. El principal dilema ético encontrado tuvo que ver con proporcionalidad al final de la vida, en dos casos, con respeto de la autonomía del paciente, incluida una solicitud de eutanasia. Conclusión El tamizaje establecido y los tratamientos efectivos tempranos se podrían reflejar en la baja frecuencia de situaciones clínicas extremas conducentes a la toma de decisiones al final de la vida, que serían dirigidas, entonces, ya sea a la reorientación del esfuerzo terapéutico, al plan de fin de vida, o a eutanasia.

Objective Ethical issues are extremely relevant in theoretical discussions in medicine, through the present article we intend to characterize patients with urologic conditions whose cases prompted consultations with the Clinical Ethics Service (CES) at a level-IV hospital in order to understand the prevalent ethical dilemmas encountered in the urological practice and their approach. Materials and Methods A descriptive study in which we performed a retrospective review of the clinical history of 20 urologic patients who were the subject of interconsultations with the CES of a level-IV hospital. We evaluated the frequency of the following variables: diagnosis, functional and clinical status at the time of the diagnosis, duration of disease evolution, and the type of ethical dilemma that prompted an interconsultation. Results Since January 2018, the CES at Hospital Universitario San Ignacio has received 1,123 interconsultation requests, and a significant increase in them has been observed due to the coronavirus disease 2019 (COVID-19) pandemic. Out of these interconsultations, only thirteen corresponded to patients with a urological diagnosis, and seven involved secondary urological compromise. The most frequent diagnosis was stage-IV prostate cancer, followed by advanced urothelial carcinoma. Proper treatment prevailed; only three cases were diagnosed at this stage, and they could not receive treatment. The main ethical dilemma involved treatment proportionality, in two cases, regarding patient autonomy, including one euthanasia request. Conclusion The established screening methods and effective early treatments are could lead to a low frequency of extreme clinical situations in which decision have to be made at the en

An online behavior change intervention to promote physical activity in adults with asthma: study protocol for a multicenter randomized controlled trial.

BACKGROUND: Behavior change interventions have been the focus of recent studies, and the COVID-19 pandemic highlighted the importance of online interventions. However, no previous studies have investigated behavior change techniques to improve physical activity in adults with asthma through online intervention. METHODS: This double-blind clinical trial will investigate the effectiveness of an online behavior change intervention in increasing physical activity and reducing sedentary behavior in adults with asthma, as well as in improving other clinical outcomes in short and medium terms. Patients with clinically stable moderate to severe asthma, who are physically inactive and do not have cardiovascular and/or osteoneuromuscular impairments will be randomized into control or intervention groups (23 in each). Both groups will carry out an online educational program (1 h). Additionally, the intervention group will receive weekly individual online sessions for 12 weeks of motivation-based behavior change intervention to promote an increase in physical activity and reduce sedentary behavior based on both self-determination theory and transtheoretical model. The intervention group will also receive an activity monitor with specific strategies related to it. Both groups will be reassessed immediately after the intervention and 6 months after that. The primary outcomes are physical activity and sedentary behavior, which will be objectively assessed by a triaxial accelerometer (Actigraph wGT3X-BT). Secondary outcomes are Asthma Control Questionnaire, Incremental Step Test, Sit-To-Stand, Timed Up-and-Go, 4-Metre Gait Speed, Asthma Quality of Life Questionnaire, Pittsburgh Sleep Quality Index, Epworth Sleepiness Scale, Actiwatch 2, and the Hospital Anxiety and Depression Scale. DISCUSSION: The intervention is unprecedented and was carefully developed to joint most characteristics and techniques of both behavioral strategies (transtheoretical model and self-determination theory). Therefore, this intervention has the potential to improve physical activity levels and asthma management and reduce sedentary behavior. As a consequence, this novel intervention will improve global health in this population and support its use in clinical practice. The intervention will be carried out online with direct weekly contact with the therapist. Consequently, it has low implementation costs, might improve patient's attendance, and has the potential to be largely offered elsewhere. TRIAL REGISTRATION: ClinicalTrials.gov NCT05241223 . Registered on January 22, 2022.

The Psychological Impact of the COVID-19 Pandemic on Postsecondary Students: An Analysis of Self-Determination.

The COVID-19 pandemic has put postsecondary students across the world at risk of psychological distress, negatively impacting their basic psychological well-being, including self-determination. Although the concept of self-determination has been widely discussed in literature, it is poorly understood within the context of postsecondary students during the COVID-19 pandemic. This study aimed to examine the concept of self-determination (SD) as it relates to postsecondary students amid the COVID-19 pandemic. The Rodgers' evolutionary method of concept analysis was used. PubMed, CINAHL, PsycINFO, and ERIC were electronically searched using the keywords "postsecondary students" "coronavirus pandemic" and "self-determination." The historical, legal, educational, and health science literature were investigated to generate a holistic definition of SD in the past. This analysis has identified the antecedents, attributes, and consequences of self-determination in postsecondary students during this global health crisis. This analysis adds to the knowledge base regarding the evolution, significance, and application of the concept of SD in the context of postsecondary students amidst the COVID-19 pandemic. Implications for future research were also explored, such as using strategies to promote SD in postsecondary students to develop resilience during the pandemic.

Ethical challenges experienced by care home staff during COVID-19 pandemic.

BACKGROUND: Care homes have been disproportionately affected during the COVID-19 pandemic. Practical challenges of enacting infection control measures in care home settings have been widely reported, but little is known about the ethical concerns of care home staff during the implementation of such measures. . OBJECTIVES: To understand the ethical challenges perceived by care home staff during the early months of the COVID-19 pandemic. RESEARCH DESIGN: An exploratory qualitative study. PARTICIPANTS AND RESEARCH CONTEXT: A purposive sample of 15 care home staff in different roles and ranks in Hong Kong was recruited to take part in semi-structured interviews between June and August 2020. ETHICAL CONSIDERATIONS: Ethical approval for this study was obtained. Participation was voluntary and anonymous. Participants had the right to withdraw from the study at any time without reprisal. FINDINGS: Three themes were identified: unclear legitimacy regarding infection control measures, limited autonomy in choices over infection control measures and inevitable harms to residents' well-being. While the participants expected that they would have legitimated power to implement infection control measures, they were resistant when their right to self-determination of testing and vaccination was infringed. They also felt trapped between ethical duties to protect care home residents from infection risk and the anticipated detrimental effects of infection control measures. CONCLUSIONS: The findings of this study reveal tensions among the ethical obligations of care home staff in response to a public health emergency. They highlight the importance of strengthening ethical sensitivity and ethical leadership in identifying and resolving the challenges of pandemic responses.

Motivational development in times of campus closure: Longitudinal trends in undergraduate students' need satisfaction and intrinsic learning motivation.

AIMS: Higher education systems around the world have enforced campus closures to combat the COVID-19 pandemic. Such measures may threaten students' basic psychological needs for relatedness, competence and autonomy, and the development of intrinsic learning motivation. Little is known about whether the implementation of campus closures yielded negative developmental patterns for these motivational variables. We aim to close this research gap. SAMPLE: We investigated developmental patterns in longitudinal data spanning the first four semesters of undergraduate students in two cohorts at one German university starting in 2013 and 2019 (cohort 1: normal study conditions; cohort 2: affected by campus closure). We used propensity score modelling to ensure comparability between both cohorts resulting in a sample of 435 students each (total n = 870 students). METHOD: We estimated conditional latent growth curve models (LGCM) to investigate developmental trends in need satisfaction and intrinsic learning motivation across the students' first four semesters and how these trends differed between the two cohorts. RESULTS: The results indicated a more maladaptive development of motivational variables for students of cohort 2 compared to students of cohort 1. More specifically, we found negative developmental trends following the implementation of campus closures for competence, relatedness and intrinsic learning motivation. CONCLUSIONS: Our findings highlight the importance of considering side effects for students' psychological functioning when discussing the implementation or renewal of campus closures. It seems important to find ways to carefully reopen higher education institutions while also minimizing further risks for students and faculty.

Examining American Adult's Mental Well and Ill-Being During the 2020 COVID-19 Pandemic Using a Self-Determination Theory Perspective.

Objectives: The COVID-19 pandemic is an international health crisis that has caused unprecedented shifts in people's environments and has threatened people's wellbeing. The current study uses self-determination theory (SDT: 10) to understand how people were handling the pandemic, which proposes three basic psychological needs (autonomy, competence, and relatedness) are vital for human growth and thriving. Furthermore, we examined how people's wellbeing and ill-being changed over the course of the pandemic. Methods: A sample of 193 American adults from around the country reported on their need satisfaction and frustration as well as well and ill-being at three time periods during the pandemic (April 2020, late July/early August 2020, and late January/early February 2021). Results: There was much variability in how people were handling the pandemic, but on average, wellbeing increased, and ill-being decreased over time. Consistent with SDT, the basic needs significantly predicted well and ill-being even during such unprecedented times of disruption. Conclusion: Our results suggest that public health officials should help individuals to focus on autonomy, competence, and relatedness behaviors during times of upheaval.

On Love, Dying Alone, and Community.

This paper examines the problem of dying alone in the context of no-visitors hospital policy during the COVID-19 pandemic. It critically analyses a rights-based solution, offering a democratized visitors policy alternative, premised on the value of legal justice. While an inclusive, participatory, and thoroughly justified visitors' policy, which takes into account the good of all stakeholders in the process, is indeed the right alternative to the paternalistic, top-down no-visitors policy, I argue that the democratized visitors' policy alternative ought to be grounded on reasons of both justice and love. Legal justice and claimable individual rights, though important, are limited and cannot fully capture the vicissitudes of mutual vulnerabilities and the moral stringency of duties of mutual care. In the context of suffering and death, instances of extreme vulnerability and interdependence, individual rights of autonomy and self-determination prove insufficient to meet our most basic needs for love, human presence, and accompaniment.

The Behavioral Factors That Influence Person-Centered Social Care: A Literature Review and Conceptual Framework.

The last decade has seen numerous policy reforms to emplace person-centered social care. Consequently, the public has been given more information, choice, and autonomy to decide how best they want to be cared for later in life. Despite this, adults generally fail to plan or prepare effectively for their future care needs. Understanding the behavioral antecedents of person-centered decision-making is thus critical for addressing key gaps in the provision of quality social care. To this end, we conducted a literature review of the psychological and health sciences with the aim of identifying the aspects that influence person-centered decision-making in social care. Using an established theoretical framework, we distilled nine behavioral factors-knowledge, competency, health, goal clarity, time discounting, familiarity, cognitive biases, cognitive overload, and emotion-associated with "Capability," "Opportunity," "Motivation," and "Behavior" that explained person-centered decision-making in social care. These factors exist to different degrees and change as a person ages, gradually impacting their ability to obtain the care they want. We discuss the role of carers and the promise of shared decision-making and conclude by advocating a shift from personal autonomy to one that is shared with carers in the delivery of quality social care.

Impact of Autonomy Support on the Association between Personal Control, Healthy Behaviors, and Psychological Well-Being among Patients with Hypertension and Cardiovascular Comorbidities.

A sense of control and autonomy are key components in guiding health-related behaviors and quality of life in people with chronic diseases. This study investigated whether autonomy support from health professionals moderates the impact of personal control on psychological well-being through healthy behaviors in patients with hypertension and cardiovascular comorbidities. Data from 149 hypertensive patients with comorbid cardiovascular risk factors were collected via self-administered surveys. A moderated mediation effect of a hypothesized model was analyzed using the PROCESS macro bootstrapping method. Autonomy support from health professionals moderated the relationship between personal control and healthy behaviors (B = 0.16, t = 2.48, p < 0.05), showing that the effect of personal control on healthy behaviors differed by the level of autonomy support. Additionally, autonomy support moderated the mediation effect of healthy behaviors in the relationship between personal control and psychological well-being (Index = 0.15; 95% CI = 0.010, 0.335). The mediation effect existed only in patients with higher autonomy support. The findings demonstrate that autonomy support from health professionals plays a crucial role in reinforcing the positive impact of personal control on healthy behaviors and psychological well-being. Enhancing the supportive attitudes of health professionals that facilitate patients' autonomous self-regulation is necessary for better health outcomes in people with combined cardiovascular diseases.

Capacity and decision making.

Pickering et al's paper argues that the capacity of the decision-maker is the sole consideration in whether a decision should stand, and that the risk of the decision should not be considered. This argument ignores the existence of the player who is of the view that a decision is not wise. This paper argues that patient autonomy is not the sole determinant of whether a person is able to make an unwise decision, particularly in healthcare where there are always others affected by the patient decision. Rather than asserting that patients have an unfettered autonomous choice on clinical decisions this paper argues that these decisions should be looked at through the lens of quality in health care that has proposed four parameters to be balanced; the patient experience, wise use of resources, the effect on public health and the clinician experience.

Mental health and self-determination profiles of the diverse population of medical students in Malaysia during the COVID-19 pandemic.

INTRODUCTION: Medical schools throughout the world were forced to modify their programming during the COVID-19 pandemic. In Malaysia, virtual learning plans were implemented for non-clinical programming, while clinical posting modifications were designed to meet local SOPs. The prolonged enforcement of these modifications to undergraduate medical education will have affected student experiences, including well-being. Since these feelings can relate to perceived relatedness, autonomy, and competence, it is important to identify any potential factors that may lead to reduced intrinsic motivation in students. It is also important to consider how demographic features may contribute to student perspectives, which can be studied using the unique diversity represented by Malaysian students. METHODS: A quantitative survey was distributed to Malaysian medical students to assess their overall wellbeing, autonomy in educational decision making, student experiences, and position on changes to graduation timing. Intrinsic components were identified using Principal Component Analysis and were aligned with the three needs for self-determination, namely relatedness, autonomy, and competence. Finally, trends in responses for participants from various sub-populations were assessed using ANOVA testing. RESULTS: Responses were collected from 442 students representing 23 accredited Malaysian medical schools. Upon validation and reliability testing, eight components were identified with themes relating to: mental health, social concerns, communication, timing of modifications, depth of learning, and student-centred learning. Of these, gender was related to mental health, student-centred learning, and delayed graduation, while stage was related to student-centred learning and delayed graduation in addition to concerns about depth of learning and timing of modifications. Interestingly, ethnicity was related to differences in opinions about delayed graduation and income was related to social concerns. CONCLUSION: The results of this study indicate that, while students were satisfied in general with the content and delivery of their programmes given the circumstances, there is evidence to suggest negative effects on emotional wellbeing and expression of student voice, due to the modifications that were made. Additionally, these feelings related to the three motivational needs, suggesting that students were experiencing a dampened motivational profile during the pandemic. Further, motivational profiles were distinct between student sub-groups, providing insight for developing appropriate and inclusive accommodations moving forward.

Increasing COVID-19 vaccine acceptance among the general population while maintaining autonomy.

The accelerated dissemination of coronavirus disease, its effects on the general public and healthcare system have been unparalleled. COVID-19 vaccination is critical for reducing the alarming incidence of the infection, promoting herd immunity, preventing associated mortality and morbidity, and maintaining public health and safety. Through the development of COVID-19 vaccines, many people are keen to protect themselves against the virus; however, the willingness for vaccination especially in Africa, is far below what is required to stop the ongoing COVID-19 pandemic. As a result, there is an immediate need to implement plans aimed at increasing population vaccine willingness. The slippery slope is whether sanctions, bans and restriction should be imposed on hesitant persons, since transmission of the epidemic can be prevented through stringent enforcement of the control barriers, while eradicating the disease would necessitate vaccination. This commentary provides recommendations about how to increase population vaccine acceptance while maintaining autonomy.

First Nations Australians' self-determination in health and alcohol policy development: a Delphi study.

BACKGROUND: Recognition of the role of structural, cultural, political and social determinants of health is increasing. A key principle of each of these is self-determination, and according to the United Nations (2007), this is a right of Indigenous Peoples. For First Nations Australians, opportunities to exercise this right appear to be limited. This paper explores First Nations Australian communities' responses to reducing alcohol-related harms and improving the health and well-being of their communities, with a focus on understanding perceptions and experiences of their self-determination. It is noted that while including First Nations Australians in policies is not in and of itself self-determination, recognition of this right in the processes of developing health and alcohol policies is a critical element. This study aims to identify expert opinion on what is needed for First Nations Australians' self-determination in the development of health- and alcohol-related policy. METHODS: This study used the Delphi technique to translate an expert panel's opinions into group consensus. Perspectives were sought from First Nations Australians (n = 9) and non-Indigenous Peoples (n = 11) with experience in developing, evaluating and/or advocating for alcohol interventions led by First Nations Australians. Using a web-based survey, this study employed three survey rounds to identify and then gain consensus regarding the elements required for First Nations Australians' self-determination in policy development. RESULTS: Twenty panellists (n = 9 First Nations Australian) participated in at least one of the three surveys. Following the qualitative round 1 survey, six main themes, 60 subthemes and six examples of policy were identified for ranking in round 2. In round 2, consensus was reached with 67% of elements (n = 40/60). Elements that did not reach consensus were repeated in round 3, with additional elements (n = 5). Overall, consensus was reached on two thirds of elements (66%, n = 43/65). CONCLUSIONS: Self-determination is complex, with different meaning in each context. Despite some evidence of self-determination, systemic change in many areas is needed, including in government. This study has identified a starting point, with the identification of elements and structural changes necessary to facilitate First Nations Australian community-led policy development approaches, which are vital to ensuring self-determination.

Justice, Bioethics, and Covid-19.

Both articles in the November-December 2021 issue of the Hastings Center Report reflect bioethics' growing interest in questions of justice, or more generally, questions of how collective interests constrain individual interests. Hugh Desmond argues that human enhancement should be reconsidered in light of developments in the field of human evolution. Contemporary understandings in this area lead, he argues, to a new way of thinking about the ethics of enhancement-an approach that replaces personal autonomy with group benefit as the primary criterion for deciding what enhancements are acceptable. In the second article, Johannes Kniess considers the many attempts within bioethics to draw on John Rawls's work to discuss health care access and social determinants of health, and he comes across as moderately optimistic that Rawls's theory of justice has ongoing relevance.