"What Is the Most Important to Them?" Swiss Health Care Proxies, Nurses, and Physicians Discuss Planning Practices for Aged Care Residents Who No Longer Have Medical Decision-Making Capacity.

INTRODUCTION: Multiple morbidities, including neurodegenerative diseases such as dementia, which result in diminished decision-making capacity (DMC), make care and care planning complicated for residential aged care facility (RACF) residents. While advance care planning has been highlighted as essential for ensuring that this population receives care that is coherent with their wishes, there are few models specifically designed for this population. This study aimed to explore the current practices for care planning and decision-making for Swiss RACF residents who no longer have medical DMC. METHODS: Semi-structured focus groups were conducted with 23 nurses in three RACFs and with 13 physicians working in 9 RACFs. Semi-structured interviews were conducted with 18 health care proxies of 16 residents without DMC. Thematic analysis was conducted to identify the most salient themes across the dataset. RESULTS: Analyses identified many collaborative processes between nurses, physicians, and health care proxies including family meetings, reconstructing residents' presumed will, making anticipatory decisions, and documenting these decisions. These processes were, however, highly variable and differed between institutions and between residents within each facility, with a lack of standardization. This variability was highlighted to be problematic for information transmission within facilities and in case of hospital or facility transfer. CONCLUSIONS: These results highlight the importance of standardized yet flexible processes of care planning for people who no longer have DMC and provide insights for the development of such models specifically designed to address this problem.

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.

Conspiracy theories, clinical decision-making, and need for bioethics debate: A response to Stout.

Although people who endorse conspiracy theories related to medicine often have negative attitudes toward particular health care measures and may even shun the healthcare system in general, conspiracy theories have received rather meager attention in bioethics literature. Consequently, and given that conspiracy theorizing appears rather prevalent, it has been maintained that there is significant need for bioethics debate over how to deal with conspiracy theories. While the proposals have typically focused on the effects that unwarranted conspiracy theories have in the public health context, Nathan Stout's recent argument concentrates on the impacts that such theories have at the individual level of clinical decision-making. In this article, I maintain that duly acknowledging the impacts of conspiracy theories that raise Stout's concern does not require bioethics debate over the proper response to the influence of conspiracy theories in healthcare. Having evaluated two possible objections, I conclude by briefly clarifying the purported import of the response to Stout.

Using Conversation Analysis to explore assessments of decision-making capacity in a hospital setting.

BACKGROUND: Healthcare professionals (HCPs) have a responsibility to conduct assessments of decision-making capacity that comply with the Mental Capacity Act 2005 (MCA). Current best-practice guidance, such as the Mental Capacity Code of Practice and National Institute for Health and Care Excellence decision-making and mental capacity guidance, does not stipulate how to accomplish this in practice, for example, what questions should be asked, how options and information should be provided. In addition, HCPs struggle to assess the capacity of individuals with communication difficulties. AIMS: This study was a service evaluation that aimed to objectively analyse, using Conversation Analysis (CA), how real-life capacity assessments were conducted in a hospital setting with patients with acquired brain injury (ABI)-related communication difficulties. A second aim was to establish the feasibility of using CA to advance knowledge of the conduct of capacity assessment. METHODS & PROCEDURES: Four naturally occurring capacity assessments were video-recorded. Recordings involved speech and language therapists, occupational therapists, neuropsychologists and patients with communication difficulties as a result of ABI. The methods and findings of CA were used to investigate the interactional behaviours of HCPs and patients during assessments of decision-making capacity. The analysis was informed by our knowledge of the MCA best practice guidance. OUTCOMES & RESULTS: An overall structure of capacity assessment that enacted some of the best-practice MCA guidance was identified in one recording, consisting of six phases: (i) opening, (ii) preparation, (iii) option-listing, (iv) test, (v) decision, and (vi) close. The preparation phase consisted of two sub-components: information gathering and information giving. Variation from this structure was observed across the dataset, notably in the way in which options were (or were not) presented. CONCLUSIONS & IMPLICATIONS: CA is a feasible empirical method for exploring the structure and conduct of capacity assessments. CA identifies and provides ways of describing interactional behaviours that align with and diverge from best-practice MCA guidance. Future CA studies including a wider range of health and social care professionals and patients have the potential to inform evidence based training for HCPs who conduct assessments of decision-making capacity. WHAT THIS PAPER ADDS: What is already known on this subject The Mental Capacity Act (MCA) is poorly implemented in practice. Healthcare professionals (HCPs) find it challenging to assess the decision-making capacity of individuals with communication difficulties, and people with communication difficulties are often excluded from or insufficiently supported during capacity assessment. Research is limited to self-report methods. Observational studies of capacity assessment are required. What this study adds This is the first study to use Conversation Analysis (CA) to explore how capacity assessments are conducted in a hospital setting by HCPs with people with communication difficulties as a result of acquired brain injury. One video-recorded capacity assessment was structured in six phases that aligned with best practice MCA guidance. However, other capacity assessments deviated from this structure. One phase, option listing, varied in practice and options were not always presented. What are the clinical implications of this work? CA revealed interactional behaviours that align with and diverge from best-practice MCA guidance. Future CA studies are warranted to inform training for health and social care professionals who conduct capacity assessments.

Capacity Reconceptualized: From Assessment Tool to Clinical Intervention.

Capacity evaluation has become a widely used assessment device in clinical practice to determine whether patients have the cognitive ability to render their own medical decisions. Such evaluations, which might be better thought of as "capacity challenges," are generally thought of as benign tools used to facilitate care. This paper proposes that such challenges should be reconceptualized as significant medical interventions with their own set of risks, side effects, and potentially deleterious consequences. As a result, a cost-benefit analysis should be implemented prior to imposing such capacity challenges, and efforts should be made to minimize such challenges in situations where they are unlikely to alter the course of treatment.

Insight and the Capacity to Refuse Treatment with Electroconvulsive Therapy.

All Australian jurisdictions have statutory provisions governing the use of electroconvulsive therapy. Cases in which the patient lacks insight into their psychotic illness and need for treatment and refuses to have ECT are particularly poignant. In Re ICO [2023] QMHC 1, the Queensland Mental Health Court considered whether a patient with a treatment-resistant psychotic illness had decision-making capacity to refuse ECT. The Court also considered whether the patient had been provided with an adequate explanation of the proposed treatment including the expected benefits, risks and adverse effects of ECT. As well as deciding whether ECT was appropriate in the circumstances, the Court considered whether there were alternative treatments including another trial of the oral antipsychotic clozapine. This article reviews issues relating to lack of insight in persons with psychotic illness and relevant considerations for determining capacity to decline ECT.

Can We Be Creative with Communication? Assessing Decision-Making Capacity in an Adult with Selective Mutism.

Selective mutism is an anxiety disorder in which an individual is unable to speak in certain social situations though may speak normally in other settings (Hua & Major, 2016). Selective mutism in adults is rare, though people with this condition might have other methods of communicating their needs outside of verbal communication. Healthcare professionals rely on a patient's ability to communicate to establish if they have decision-making capacity. This commentary responds to a case of a young adult patient with selective mutism and social anxieties that significantly limited his ability to communicate with anyone in the healthcare team. This required a creative, patient-centered approach to engage in meaningful communication.

Specific Trends in Pediatric Ethical Decision-Making: An 18-Year Review of Ethics Consultation Cases in a Pediatric Hospital.

This is a qualitative examination of ethics consultation requests, outcomes, and ethics committee recommendations at a tertiary/quaternary pediatric hospital in the U.S. The purpose of this review of consults over an 18-year period is to identify specific trends in the types of ethical dilemmas presented in our pediatric setting, the impact of consultation and committee development on the number and type of consults provided, and any clinical features and/or challenges that emerged and contributed to the nature of ethical situations and dilemmas. Furthermore, in reviewing clinical ethics consultation trends for nearly two decades, we can identify topic areas for further ethics education and training for ethics consultants, ethics committee members, and pediatric healthcare teams and professionals based on our experiences. Our study with nearly two decades of data prior to the COVID-19 pandemic can serve as groundwork for future comparisons of consultation requests and ethics support for pediatric hospitals prior to, during, and following a pandemic.

The two lives of the Mental Capacity Act: rethinking East-west binaries in comparative analysis.

The Mental Capacity Act 2005 in England and Wales and Singapore's Mental Capacity Act 2008 (which substantially transplants provisions from the former statute) might appear to be twins on paper, but they have gone on to lead very different lives. In this article, we examine how two broadly identical laws have taken on divergent identities within their respective jurisdictions when implemented and interpreted in the courtroom. We reveal and analyse differences in parliamentary intent concerning at what stage a person's decision-making agency is putatively empowered; judicial development of central concepts; underlying socio-cultural commitments; and outline opportunities for bi-directional learning in mental capacity law across both jurisdictions.

Decision-making capacity assessments in New Zealand and Australia: a systematised review.

In an ageing world with a growing prevalence of neurodegenerative disease and recent voluntary assisted dying laws in New Zealand and several Australian states, healthcare professionals are increasingly being relied upon to conduct decision-making capacity (DMC) assessments. There is no legislation in New Zealand or Australia to provide clear guidance on conducting DMC assessments. This systematised review aimed to examine the current processes, issues and debates within DMC assessments as detailed in Australasian literature. Six databases were searched: CINAHL, Scopus, Embase, Medline, PsycINFO and Google Scholar following PRISMA guidelines. A total of 33 articles were included in the review and, following a quality assessment, an inductive approach was used to determine key topics which were synthesised in the review. Five distinct issues were revealed, namely a lack of standardisation and guidelines in approaching DMC assessments, training and knowledge of DMC, professional roles, medical and psychiatric complexities and the medico-legal interface.

Use of the QuickSort with older adults whose lifestyle decision-making capacity is being questioned.

OBJECTIVES: Cognitive impairment affects older adults' capacity to live independently and make lifestyle decisions (lifestyle decision-making capacity; LS-DMC). Cognitive screens and clinical interviews are often used to assess people's need for living-supports prior to conducting comprehensive LS-DMC assessments in busy clinical settings. This study investigated whether the QuickSort - a brief new cognitive screen - provides efficient and accurate information regarding patients' LS-DMC when initially interviewed. METHODS: This is an observational and diagnostic accuracy study of older inpatients (≥60 years) consecutively referred for neuropsychological assessment of LS-DMC (n = 124). The resources required by inpatients with questionable LS-DMC were quantified (length of hospital stay, living-supports). QuickSort scores, patient background information, and two common cognitive screens were used to differentiate between older inpatients (n = 124) who lacked (64%)/did not-lack (36%) LS-DMC. RESULTS: Hospitalizations averaged 49 days, with 62% of inpatients being readmitted within one year. The QuickSort differentiated between those lacking/not-lacking LS-DMC better than two common cognitive screens and patient information. The likelihood that inpatients lacked LS-DMC increased by a factor of 65.26 for QuickSort scores <2 and reduced by a factor of 0.32 for scores ≥13. Modeling revealed that the post-test likelihood of lacking LS-DMC increased to 99% (scores <2) and reduced to 30% (scores ≥ 13) in settings where many inpatients lack LS-DMC. CONCLUSIONS: Older adult inpatients with questionable LS-DMC have a high risk of extended hospitalization and readmission. The QuickSort provides time-efficient and sensitive information regarding patients' LS-DMC, making it a viable alternative to longer cognitive screens that are used at the initial interview stage.

Safer Sex Negotiation Among Ghanaian Women in Sexual Unions: Does Women's Household Decision-Making Capacity Matter?

Women's ability to negotiate for safer sex has been found to be dependent on their household decision making power. However, there is paucity of studies investigating the association between women's household decision making power and safer sex negotiation in Ghana. Thus, we examined the association between women's household decision making autonomy and safer sex negotiation among Ghanaian women in sexual unions using the 2014 Ghana's Demographic and Health Survey. Descriptive statistics, Chi-square test, and multivariable logistic regression models were performed. Statistical significance was set at p < .05 at 95% confidence interval. The results showed high prevalence of safer sex negotiation among women with high household decision-making capacity (91.6%). Compared to women with low household decision making autonomy, those with high autonomy in household decision making were more likely to negotiate for safer sex (aOR = 2.06; CI = 1.32-3.21). Women aged 25-34 were more likely to negotiate for safer sex compared to those aged 15-24 (aOR = 1.50; CI = 1.07-2.11). Higher odds of safer sex negotiation were found among women with comprehensive HIV and AIDS knowledge (aOR = 1.49; CI = 1.09-2.05), women who had tested for HIV (aOR = 1.57; CI = 1.27-1.95) and those exposed to newspaper (aOR = 1.80; CI = 1.17-2.78) compared to those who had no comprehensive knowledge on HIV and AIDS, those who had never tested for HIV and those who were not exposed to newspaper, respectively. However, women who belonged to other ethnic groups and the Islamic religion had lower odds of safer sex negotiation compared to Akans (aOR = 0.68; CI = 0.48-0.96) and Christian women (aOR = 0.63; CI = 0.46-0.85). Women empowerment programmes need to be intensified to enable Ghanaian women with low household decision making autonomy to negotiate for safer sex with their partners. Ghana could achieve the Sustainable Development Goals (SDGs), particularly, SDG 3.7 (universal access to sexual and reproductive health services), and SDG 5 (achieve gender equality and empower all women and girls) when household decision-making capacity among women is further strengthened.

Conspiracy theories and clinical decision-making.

When a patient's treatment decisions are the product of delusion, this is often taken as a paradigmatic case of undermined decisional capacity. That is to say, when a patient refuses treatment on the basis of beliefs that in no way reflect reality, clinicians and ethicists tend to agree that their refusal is not valid. During the COVID-19 pandemic, however, we have witnessed many patients refuse potentially life-saving interventions not based on delusion but on conspiracy beliefs. Importantly, many of the beliefs espoused by conspiracy theorists resemble delusions in a number of relevant ways. For instance, conspiracy beliefs often posit states of affairs that could not possibly exist in the world, they are recalcitrant in the face of disconfirming evidence, and they tend to put the believer in a state of paranoia. Given these similarities, how should we think about conspiracy theorists' capacity for making clinical decisions? In this paper, I attempt to answer this question by first offering an account of just what makes some set of beliefs count as a conspiracy theory. Second, I attempt to disambiguate conspiracy beliefs from delusions by exploring important conceptual and psychological features of both. Finally, I apply standard criteria for assessing a patient's decision-making capacity to instances of conspiracy beliefs and argue that, although the picture is muddy, there may be cases in which conspiracy beliefs undermine capacity. I end by exploring the implications that this might have for surrogate decision-making and addressing potential objections.

Medical staff's sense of awareness of informed consent for adolescent cancer patients and the need for decision-making support practiced from the perspective of trauma-informed approach.

It has not been established how to assess children's and adolescents' decision-making capacity (DMC) and there has been little discussion on the way their decision-making (DM). The purpose of this study was to examine actual situation and factors related to difficulties in explaining their disease to adolescent cancer patients or obtaining informed consent (IC). The cross-sectional questionnaire survey was conducted. Physicians who have been treating adolescent cancer patients for at least five years answered a self-administered questionnaire uniquely developed about clinical difficulties in explaining, IC and factors related patient's refusal of medical treatment (RMT). Descriptive statistics for each item and a polychoric correlation analysis of the problems and factors related to the explanation were conducted. As a result, fifty-six physicians were participated (rate of return: 39%). Explaining the disease and treatment to patients (83.9%), IC to patients (80.4%), and explaining the disease and treatment to parents (78.6%) was particularly problematic. Difficulties to provide support related with patient's refusal of medical treatment and to explain disease and treatment for patient and parents were related to difficulties obtaining IC for the patient. Conclusion: There are clinically difficult to explain for the patient or parents and to obtain IC for the patient. It is necessary to establish a disease acceptance assessment tool for the adolescence generation so that it can be applied in the field.

The capacity to consent to treatment is altered in suicidal patients.

BACKGROUND: Many patients with depression refuse treatment. Moreover, suicide attempters often display low perceived need of treatment and impaired decision-making. These observations raise questions about the capacity to treatment consent in depressed suicide attempters (SA). METHODS: In patients with current depressive episode (N = 33 SAs and N = 27 non-SAs), consent capacity was evaluated with the MacArthur Competence Assessment Tool for Treatment (MacCAT-T), insight with the Beck Cognitive Insight Scale, and depression severity with the Beck Depression Inventory (BDI). RESULTS: The median BDI score in the whole sample (N = 60) was 21 [10;36], and was higher in SAs than non-SAs (27 [11;36] vs. 15 [10:33], p < 0.001). Consent capacity was impaired in 30% (appreciation), 53% (reasoning) and 60% (understanding) of all patients. MacCAT-T sub-scores were lower in SAs than non-SAs (understanding: 4.4 [2.35;5.8] vs. 5.3 [3.13;6]); appreciation: 3 [1;4] vs. 4 [2;4]); reasoning (4 [1;7] vs. 7 [3;8]), and ability to express a choice: 1 [0;2] vs. 2 [0;2]; all p < 0.001). In multivariate analyses, suicide attempt history and depression severity (but not insight) were negatively associated with MacCAT-T sub-scores. CONCLUSION: More research is needed on the capacity to consent to treatment of patients with depression, particularly suicidal individuals, to make informed choices about their treatment. Trial registration The Montpellier University Hospital Institutional Review Board approved the study (No. 202100714).

Mental capacity-why look for a paradigm shift?

Challenges to the legitimacy of mental capacity over the past 10 years have been spearheaded by the Committee on the Rights of Persons with Disabilities, the treaty body for the UN Convention on the Rights of Persons with Disabilities (CRPD). This challenge has been asserted to have produced a 'paradigm shift'. In this article, we examine why that interpretation has had such limited traction in the legal policy arena, and whether it should have traction. We also analyse whether the Committee has subtly but importantly shifted its position. We then develop an argument that the true goal, compatible with the CRPD, is the satisfactory determination of whether a person has or lacks mental capacity to make or take a relevant decision. Our article contextualises multi-disciplinary, research-informed guidelines designed as a contribution to satisfactory determination. While our article is based upon the position in England and Wales, we suggest that our conclusions are of wider application.

Public awareness of legal decision-making capacity and planning instruments in dementia: implications for health care practitioners.

The protection of a person facing difficulties with legal decision-making can be challenging; however, estate planning documents (EPDs) can offer safeguards. Little is known about the community awareness of EPDs and their perceived importance, including for people with dementia. Two-hundred and thirty adults read a mild dementia vignette, proposed a diagnosis for the vignette character (VC), and rated the VC's legal decision-making capacity (DMC). The effect on ratings about DMC under different conditions was explored (e.g., variation of VC characteristics and the decision). Awareness, and the personal importance, of EPDs were assessed. DMC was affected by the variations in the VC's age, diagnosis, and the decision, as high- or low-stakes, but not VC sex. Awareness of EPDs was low; however, planning importance was increased for dementia. Although the public understand that dementia affects DMC, they require further information about EPDs to validly enact them, thereby reducing potential vulnerability.

Rapid-Response Treatments for Depression and Requests for Physician-Assisted Death: An Ethical Analysis.

Depression is common at the end of life, and there is longstanding concern that it may affect terminally ill patients' decisions to request physician-assisted death (PAD). However, it is difficult for clinicians to determine the role of depression in a patient's PAD request. A recent case series described rapid responses to intranasal ketamine in three patients with terminal illness and comorbid depression who had requested PAD. One patient withdrew her request (which, in retrospect, had been driven by her depression) while the others maintained their requests; in all three, the rapid relief clarified the role of depression in the patients' decision-making. In addition to ketamine, there are other emerging rapid-response treatments for depression, including psilocybin with psychological support and functional connectivity-guided transcranial magnetic stimulation. We examine three key ethical implications of such treatments: their role in clarifying the decision-making capacity of depressed patients requesting PAD; the potential tension between the legal definition of irremediability in some jurisdictions and the ethical obligations of clinicians; and the likely obstacles to treatment access and their implications for equal respect for autonomy of patients.

Three Kinds of Decision-Making Capacity for Refusing Medical Interventions.

According to a standard account of patient decision-making capacity (DMC), patients can provide ethically valid consent or refusal only if they are able to understand and appreciate their medical condition and can comparatively evaluate all offered treatment options. We argue instead that some patient refusals can be capacitated, and therefore ethically authoritative, without meeting the strict criteria of this standard account-what we call comparative DMC. We describe how patients may possess burdens-based DMC for refusal if they have an overriding objection to at least one burden associated with each treatment option or goals-based DMC for refusal if they have an overriding goal that is inconsistent with treatment. The overridingness of a patient's objections to burdens, or of their commitment to a goal, can justify the moral authority of their refusal, even when a patient lacks some of the cognitive capacities that standard accounts of DMC involve.

Suffering is not enough: Assisted dying for people with mental illness.

Persons with mental disorders who are resistant to evidence-based treatment can be referred to as patients with severe and persistent mental illness (SPMI). Some patients with SPMI develop a strong wish for assisted dying. Switzerland has the longest history of non-medicalized assisted dying, which is considered a civil right even in non-pathological situations. Public debate in Switzerland about the issue of suffering in the context of assisted dying is current and ongoing. The Swiss Academy of Medical Sciences recently revised its end-of-life policy and specified intolerable suffering due to severe illness or functional limitations (and acknowledged as such by a physician) as a core criterion for assisted dying. We argue that suffering is a necessary but insufficient condition for assisted dying, and that the criteria should also include decision-making capacity and refractoriness of suffering. We further contend that suffering is a subjective experience that can only be quantified by the patient and cannot be objectively compared across individuals. Some patients with SPMI and refractory suffering who maintain decision-making capacity will meet the criteria for assisted dying. We advocate for palliative psychiatric care that relinquishes any disease-modifying therapy, accepts limited survival chances, and focuses on measures that enhance the patient's quality of life, understood in a very broad sense beyond only health-related quality of life. This approach should also relieve suffering as much as possible while remaining open to the possibility of assisted dying following conscientious assessment of the criteria.