Challenges Addressing Lung Cancer Screening for Patients With Multimorbidity in Primary Care: A Qualitative Study.

PURPOSE: Many individuals who are eligible for lung cancer screening have comorbid conditions complicating their shared decision-making conversations with physicians. The goal of our study was to better understand how primary care physicians (PCPs) factor comorbidities into their evaluation of the risks and benefits of lung cancer screening and into their shared decision-making conversations with patients. METHODS: We conducted semistructured interviews by videoconference with 15 PCPs to assess the extent of shared decision-making practices and explore their understanding of the intersection of comorbidities and lung cancer screening, and how that understanding informed their clinical approach to this population. RESULTS: We identified 3 themes. The first theme was whether to discuss or not to discuss lung cancer screening. PCPs described taking additional steps for individuals with complex comorbidities to decide whether to initiate this discussion and used subjective clinical judgment to decide whether the conversation would be productive and beneficial. PCPs made mental assessments that factored in the patient's health, life expectancy, quality of life, and access to support systems. The second theme was that shared decision making is not a simple discussion. When PCPs did initiate discussions about lung cancer screening, although some believed they could provide objective information, others struggled with personal biases. The third theme was that ultimately, the decision to be screened was up to the patient. Patients had the final say, even if their decision was discordant with the PCP's advice. CONCLUSIONS: Shared decision-making conversations about lung cancer screening differed substantially from the standard for patients with complex comorbidities. Future research should include efforts to characterize the risks and benefits of LCS in patients with comorbidities to inform guidelines and clinical application.

Undermining autonomy and consent: the transformative experience of disease.

Disease radically changes the life of many people and satisfies formal criteria for being a transformative experience. According to the influential philosophy of Paul, transformative experiences undermine traditional criteria for rational decision-making. Thus, the transformative experience of disease can challenge basic principles and rules in medical ethics, such as patient autonomy and informed consent. This article applies Paul's theory of transformative experience and its expansion by Carel and Kidd to investigate the implications for medical ethics. It leads to the very uncomfortable conclusion that disease involves transformative experiences in ways that can reduce people's rational decision-making ability and undermine the basic principle of respect for autonomy and the moral rule of informed consent. While such cases are limited, they are crucial for medical ethics and health policy and deserve more attention and further scrutiny.

Algorithms advise, humans decide: the evidential role of the patient preference predictor.

An AI-based 'patient preference predictor' (PPP) is a proposed method for guiding healthcare decisions for patients who lack decision-making capacity. The proposal is to use correlations between sociodemographic data and known healthcare preferences to construct a model that predicts the unknown preferences of a particular patient. In this paper, I highlight a distinction that has been largely overlooked so far in debates about the PPP-that between algorithmic prediction and decision-making-and argue that much of the recent philosophical disagreement stems from this oversight. I show how three prominent objections to the PPP only challenge its use as the sole determinant of a choice, and actually support its use as a source of evidence about patient preferences to inform human decision-making. The upshot is that we should adopt the evidential conception of the PPP and shift our evaluation of this technology towards the ethics of algorithmic prediction, rather than decision-making.

Mental integrity, autonomy, and fundamental interests.

Many technology ethicists hold that the time has come to articulate neurorights: our normative claims vis-à-vis our brains and minds. One such claim is the right to mental integrity ('MI'). I begin by considering some paradigmatic threats to MI (§1) and how the dominant autonomy-based conception ('ABC') of MI attempts to make sense of them (§2). I next consider the objection that the ABC is overbroad in its understanding of what threatens MI and suggest a friendly revision to the ABC that addresses the objection (§3). I then consider a second objection: that the ABC cannot make sense of the MI of the non-autonomous This objection appears fatal even to the revised ABC (§4). On that basis, I develop an alternative conception on which MI is grounded in a plurality of simpler capacities, namely, those for affect, cognition, and volition Each of these more basic capacities grounds a set of fundamental interests, and they are for that reason worthy of protection even when they do not rise to the level of complexity necessary for autonomy (§5). This yields a fully general theory of MI that accounts for its manifestations in both the autonomous and the non-autonomous.

Harmonising green informed consent with autonomous clinical decision-making: a reply to Resnik and Pugh.

Resnik and Pugh recently explored the ethical implications of routinely integrating environmental concerns into clinical decision-making. While we share their concern for the holistic well-being of patients, our response offers a different clinical and bioethical stance on green informed consent and patient autonomy. Contrary to the authors' lack of data to support their concerns about provider and patient willingness to engage in climate-related conversations, we provide evidence supporting their sustainability engagement and stress the importance of a proactive, anticipatory approach in healthcare to align with evolving societal values. If climate change is perceived as a politicised issue, though it is not inherently so, healthcare providers are professionally trained to address sensitive subjects and have a duty to inform patients about potential health risks. Recognising the environmental crisis as a health crisis underscores the direct connection between environmental hazards and patients' well-being. Our perspective advocates for integrating individual considerations, societal responsibilities and systemic changes to promote environmentally sustainable healthcare.

Providing medically assisted dying in Canada: a qualitative study of emotional and moral impact.

PURPOSE: Medical assistance in dying (MAiD) in Canada places the medical provider at the centre of the process. The MAiD provider holds primary responsibility for determining eligibility and becomes acquainted with patients' inner desires and expressions of suffering. This is followed by the MAiD procedure of administering the lethal agent and being present at the death of eligible patients. We report participants' perceptions of the emotional and moral impacts of this role. METHODOLOGY: Two years after MAiD was legalised in Canada, 22 early-adopting physician providers were interviewed. Data were examined using both phenomenological analysis and a novel ChatGPT-enhanced analysis of an anonymised subset of interview excerpts. FINDINGS: Participants described MAiD as emotionally provocative with both challenges and rewards. Providers expressed a positive moral impact when helping to optimise a patient's autonomy and moral comfort with their role in relieving suffering. Providers experienced tensions around professional duty and balancing self with service to others. Personal choice and patient gratitude enhanced the provider experience, while uncertainty and conflict added difficulty. CONCLUSIONS: Participants described MAiD provision as strongly aligned with a patient-centred ethos of practice. This study suggests that, despite challenges, providing MAiD can be a meaningful and satisfying practice for physicians. Understanding the emotional and moral impact and factors that enhance or detract from the providers' experience allows future stakeholders to design and regulate assisted dying in ways congruent with the interests of patients, providers, families and society.

Abortion and the basis of equality: a reply to Miller.

Miller has recently argued that the standard liberal and moderate positions on abortion are incapable of grounding the claim that 'all non-disabled adult humans are equal'. The reason, he claims, is such accounts base the intrinsic moral worth of a human being on some property (or set of properties) which comes in degrees. In contrast, he argues that moral equality must reside in some binary property, such as the property of being human. In this paper, I offer three criticisms of Miller's position.

Fetoscopic laser photocoagulation: a medically reasonable treatment option in the management of types II and III vasa previa.

Vasa previa is a condition where unprotected fetal vessels cross the cervix within the membranes, posing a considerable risk of fetal death or severe morbidity if the membranes rupture before or during delivery. There has not been a definitive in utero treatment for this condition. Patients are typically closely monitored and hospitalized in the early third trimester and scheduled for cesarean delivery before term. This approach poses considerable physical, social, psychological, and financial challenges for pregnant patients and their families. Furthermore, fetal vessel rupture may lead to severe hypoxic-ischemic injury and consequent neurodevelopmental impairment. Finally, babies delivered early due to vasa previa may face both the short- and long-term consequences of prematurity. Recently, fetoscopic laser photocoagulation using a single-port fetoscope has emerged as a potential therapeutic option for patients with types II and III vasa previa. This innovative approach aims to reduce hospital stays, increases the chance of successful vaginal delivery, and potentially allows pregnancies to reach full term, providing lifelong benefits for the infant. Preliminary clinical studies on human subjects have demonstrated promising results concerning the feasibility, safety, and efficacy of this intervention for a subset of patients with types II and III vasa previa. After reviewing the current state of the art, we argued that offering fetoscopic laser photocoagulation in specialized centers under IRB supervision meets the ethical obligations of beneficence and non-maleficence for both pregnant and fetal patients, as well as the autonomy-based obligations for pregnant patients.

Advanced Care Directives in Residential Aged Care for Residents with Major Neuro-Cognitive Disorders (Dementia): A Scoping Review.

The aim of this review was to identify, assess, collate, and analyze existing research that has made a direct contribution to aiding understanding of the ethical and decision-making issues related to the use of advance care directives for people with dementia and/or other major neurocognitive disorders and/or their surrogate decision-makers on treatment. The Web of Science, Scopus, PubMed, CINAHL, Academic Search Ultimate, and MEDLINE databases were searched between August and September 2021 and July to November 2022 limited to primary studies written in English, Spanish, or Portuguese. Twenty-eight studies of varying quality that addressed related thematic areas were identified. These themes being support for autonomy in basic needs (16%), making decisions ahead/planning ahead and upholding these decisions (52%), and support in decision-making for carers (32%). Advance care directives are an important mechanism for documenting treatment preferences in patient care planning. However, the available literature on the topic is limited in both quantity and quality. Recommendations for practice include involving decision makers, promoting educational interventions, exploring how they are used and implemented, and promoting the active involvement of social workers within the healthcare team.

From a critique of the principle of autonomy to an ethic of heteronomy.

Etymologically, autonomy is the ability to give oneself rules and follow them. It is an important principle of medical ethics, which can sometimes raise some tensions in the care relationship. We propose a new definition of ethics, the ethics of heteronomy: a self-normative, discursive and responsible autonomy. Autonomy cannot be considered without the responsibility each person must have towards others. In the care relationship, autonomy would be more the ability of each person to reach out to others than the ability to decide alone. The care relationship must be seen as an accompaniment of equals where each person allows the other to be rephrased. Autonomy would then no longer be absolute but relative to each situation. Being autonomous would become an ability for adaptation of the patient-doctor pair. The accompaniment allows the birth of a relationship of trust, giving the patient and the doctor the ability to touch and let themselves be touched, thus making each one progress in this reciprocal dialectic. The care relationship becomes the possibility of considering autonomy as a collective and not as an individual notion only. Paradoxically, by promoting the autonomy of the patient-doctor pair, they both develop their own autonomy.

Supporting self-determination in mental health recovery: Strategies employed by occupational therapists.

INTRODUCTION: Self-determination is a core component of mental health recovery and a predictor of positive outcomes. The literature calls for occupational therapists to lead practice change to greater recovery-orientation, including facilitating people's self-determination. However, systemic challenges thwart translation of policy into practice and therapists report a lack of confidence in implementing recovery-oriented principles. This study aimed to understand the strategies that mental health occupational therapists employ to support people's self-determination. METHODS: Data were collected through an international on-line questionnaire principally comprising two open-ended questions designed to elicit deep reflective personal accounts. Participants were asked about an experience in which they supported a person's self-determination and the factors that either facilitated or hindered this experience. Qualitative data were analysed using inductive thematic analysis, guided by constant comparative methods. FINDINGS: Thirty-four therapists, predominantly from Australia (n = 30), participated. Therapists described supporting self-determination as a multifaceted process that involved: (1) working on myself, (2) working with the person, and (3) working with others. They emphasised that the combined use of various strategies across these three areas of work was important to support people's self-determination. Further, awareness of and addressing issues of power in their practice was key. CONCLUSION: This study supports the translation of recovery-oriented principles into practice by revealing the nuanced strategies implemented by occupational therapists striving to support self-determination. Participants employed diverse strategies to empower people to take the 'driver's seat' in their mental health recovery journey. Insights from this study will support other occupational therapists to actualise recovery-oriented principles and better support self-determination in their practice. To effectively implement self-determination strategies, therapists must reflect on and address existing power differentials within mental health services, particularly between themselves and the people they support.

Non-Psychiatric Treatment Refusal in Patients with Depression: How Should Surrogate Decision-Makers Represent the Patient's Authentic Wishes?

Patients with mental illness, and depression in particular, present clinicians and surrogate decision-makers with complex ethical dilemmas when they refuse life-sustaining non-psychiatric treatment. When treatment rejection is at variance with the beliefs and preferences that could be expected based on their premorbid or "authentic" self, their capacity to make these decisions may be called into question. If capacity cannot be demonstrated, medical decisions fall to surrogates who are usually advised to decide based on a substituted judgment standard or, when that is not possible, best interest. We propose that in cases where the patient meets the widely accepted cognitive criteria for capacity but is making decisions that appear inauthentic, the surrogate may best uphold patient autonomy by following a "restorative representation" model. We see restorative representation as a subset of substituted judgement in which the decision-maker retains responsibility for deciding as the patient would have, but discerns the decision their "truest self" would make, rather than inferring their current wishes, which are directly influenced by illness. Here we present a case in which the patient's treatment refusal and previously undiagnosed depression led to difficulty determining the patient's authentic wishes and placed a distressing burden on the surrogate decision-maker. We use this case to examine how clinicians and ethicists might better advise surrogates who find themselves making these clinically and emotionally challenging decisions.

Psychological Well-Being, Everyday Functioning, and Autonomy In Emerging Adults with a Congenital Heart Defect.

OBJECTIVE: To characterize the psychological well-being, everyday functioning, and autonomy of emerging adults with congenital heart disease (CHD) and explore how they relate to the executive function (EF) deficits commonly observed in this population. STUDY DESIGN: Questionnaires assessing psychological well-being (encompassing psychosocial functioning and resilience), EF, and age-appropriate indicators of everyday function and autonomy (eg, housing, education, employment, relationship status) were completed by participants with CHD (16-26 years) who underwent open-heart surgery during infancy and age- and sex-matched controls. RESULTS: A total of 58 emerging adults with CHD and 57 controls participated in this study. Mean scores on the resilience and psychosocial functioning questionnaires were not significantly different between CHD and control participants. Emerging adults with CHD also did not differ from controls in terms of holding a driver's license, involvement in a romantic relationship, or current employment status. Multiple linear regression identified that better EF was associated with better psychological well-being. CONCLUSIONS: This study supports the need for systematic screening for EF deficits during adolescence and early adulthood to promote optimal well-being in this population. Further research is required to continue to document the everyday experiences of adolescents and young adults with CHD to identify protective factors associated with a successful and satisfying transition to adult life.

Is Mobility Sufficient to Understand Community Participation of Adolescents and Young Adults With Cerebral Palsy? The Mediating and Moderating Roles of Contextual Factors.

OBJECTIVE: To explore whether self-determination and family socioeconomic status (SES) mediate and/or moderate the relationship between mobility and community participation of adolescents and young adults with cerebral palsy (CP). DESIGN: Survey. SETTING: Online platform. PARTICIPANTS: Of 55 eligible adolescents/young adults with CP, 50 agreed to participate and 2 were excluded. The final convenience sample included 48 individuals (N=48), aged 15-32 years, levels I-IV of the Gross Motor Function Classification System and I-II of the Communication Function Classification System. MAIN OUTCOME MEASURES: The Temple University Community Participation Measure documented the amount, breadth, and insufficiency/sufficiency ratios of participation across 26 community settings. The ARC Self-determination Scale and the Mobility Scale of the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) measured individuals' self-determination (ie, autonomy, psychological empowerment, self-realization) and mobility skills, respectively. The Brazilian Economic Classification Criteria-2021 assessed family SES. RESULTS: Analyses of mediating/moderating effects revealed that the influence of individuals' mobility skills on their breadth of community participation was mediated by autonomy. Family SES moderated the indirect effect of mobility on community participation breadth through autonomy. When the model was adjusted for participants' age, individuals with higher SES reported greater breadth in community participation than those from moderate and lower SES for all mobility levels. However, the magnitude of the differences among individuals of different SES levels diminished as mobility increased. CONCLUSIONS: The mobility skills of youths with CP influence their community participation through autonomy. To foster greater engagement of these individuals in the community, rehabilitation professionals should focus not only on improvement of mobility skills but also on the promotion of self-determined behaviors, especially autonomy.

Green bioethics, patient autonomy and informed consent in healthcare.

Green bioethics is an area of research and scholarship that examines the impact of healthcare practices and policies on the environment and emphasises environmental values, such as ecological sustainability and stewardship. Some green bioethicists have argued that healthcare providers should inform patients about the environmental impacts of treatments and advocate for options that minimise adverse impacts. While disclosure of information pertaining to the environmental impacts of treatments could facilitate autonomous decision-making and strengthen the patient-provider relationship in situations where patients have clearly expressed environmental concerns, it may have the opposite effect in other situations if makes patients feel like they are being judged or manipulated. We argue, therefore, that there is not a generalisable duty to disclose environmental impact information to all patients during the consent process. Providers who practice green bioethics should focus on advocating for system-level changes in healthcare financing, organisation and delivery and use discretion when bringing up environmental concerns in their encounters with patients.

The Patient preference predictor and the objection from higher-order preferences.

Recently, Jardas et al have convincingly defended the patient preference predictor (PPP) against a range of autonomy-based objections. In this response, I propose a new autonomy-based objection to the PPP that is not explicitly discussed by Jardas et al I call it the 'objection from higher-order preferences'. Even if this objection is not sufficient reason to reject the PPP, the objection constitutes a pro tanto reason that is at least as powerful as the ones discussed by Jardas et al.

Response to commentaries: 'autonomy-based criticisms of the patient preference predictor'.

The authors respond to four JME commentaries on their Feature Article, 'Autonomy-based criticisms of the patient preference predictor'.

Suicide booths and assistance without moral expression: a response to Braun.

In a recent paper, Braun argued for an autonomy-based approach to assisted suicide as a way to avoid the expressivist objection to assisted dying laws. In this paper, I will argue that an autonomy-based approach actually extends the expressivist objection to assisted dying because it is not possible for one agent to assist another in pursuit of a goal without expressing that it would be good for that goal to come about. Braun argued that assisted dying should be viewed purely as an individual's autonomous action, but this requires the assistance of the medical professional to be understood as that of a non-moral automaton, such as a suicide booth. Instead, it will be argued that a beneficent motivation to promote human flourishing provides moral reasons for both non-interference in the actions, for example, suicide, of competent agents and for considering whether assisting another agent with their goal will promote their flourishing.

Reification and assent in research involving those who lack capacity.

In applied ethics, and in medical treatment and research, the question of how we should treat others is a central problem. In this paper, I address the ethical role of assent in research involving human beings who lack capacity. I start by thinking about why consent is ethically important, and consider what happens when consent is not possible. Drawing on the work of the German philosopher Honneth, I discuss the concept of reification-a phenomenon that manifests itself when we fail to observe or respond to our fellow humans' need for recognition. I suggest that assent is a way of responding to this moral need for recognition, which exists independently of cognitive capacity. I will look at the circumstances in which consent cannot be obtained from human beings, and ask whether some of the same ethically important considerations that underpin the need for consent might be achieved through seeking assent. I discuss the ways in which this might be beneficial for researchers, for prospective research participants and for society at large.

Replication crisis and placebo studies: rebooting the bioethical debate.

A growing body of cross-cultural survey research shows high percentages of clinicians report using placebos in clinical settings. One motivation for clinicians using placebos is to help patients by capitalising on the placebo effect's reported health benefits. This is not surprising, given that placebo studies are burgeoning, with increasing calls by researchers to ethically harness placebo effects among patients. These calls propose placebos/placebo effects offer clinically significant benefits to patients. In this paper, we argue many findings in this highly cited and 'hot' field have not been independently replicated. Evaluating the ethicality of placebo use in clinical practice involves first understanding whether placebos are efficacious clinically. Therefore, it is crucial to consider placebo research in the context of the replication crisis and what can be learnt to advance evidence-based knowledge of placebos/placebo effects and their clinical relevance (or lack thereof). In doing so, our goal in this paper is to motivate both increased awareness of replication issues and to help pave the way for advances in scientific research in the field of placebo studies to better inform ethical evidence-based practice. We argue that, only by developing a rigorous evidence base can we better understand how, if at all, placebos/placebo effects can be harnessed ethically in clinical settings.