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Background: A core concept behind patient-centred approaches is the need to treat people with, and preserve, dignity in care settings. People receiving palliative care are one group who may have particularly sensitive needs in terms of their condition, symptoms and life expectancy. Dignity is more likely to be violated in hospital settings. Given the high percentage of people with palliative care needs who are admitted to hospital during their last year of life, the provision of dignity enhancing and preserving care in that setting is of vital importance. Aim: To examine international evidence relating to dignity and person-centred care for people with palliative care needs in the acute hospital setting. Design: A systematic literature review was conducted, incorporating data extraction, analysis and quality appraisal of included papers. Data sources: MEDLINE, CINAHL, PsycINFO, ASSIA, EMBASE, Cochrane Database and Web of Science. Inclusion dates: 1 January 2000–1 April 2014. Eligibility criteria: Adult palliative care, acute care setting, dignity or person-centred care. Results: In all, 33 papers met the inclusion criteria for the review. Papers highlighted the many and varied potential threats to dignity for people with palliative care needs in acute settings, including symptom control and existential distress, approaches and models in care provision and healthcare settings and design. Conclusion: Acute hospital staff require adequate training, including symptom control, and the correct environment in which to deliver dignified and person-centred end-of-life care. Specific models/approaches to care can be beneficial, if adequate training regarding implementation is given. The needs of family members also require consideration, particularly following bereavement. [ABSTRACT FROM AUTHOR]

Accessible summary The governments in the UK want people with learning disabilities to have a voice about what happens in their own life and also in policy., One way of doing this is through research. This paper looks at two inclusive research projects, which were about people using direct payments and personal assistants. The projects both employed people with learning disabilities., Each of these projects made a training pack from the research, so that they would help people with learning disabilities and their supporters. They also had some effects in ways that were not planned, because the government wanted to learn from them about inclusive research., All research seems to have most effect when there are many voices seeking change, including those of policy makers themselves., Inclusive research is a way of achieving 'choice and control'. But just like with direct payments and personal budgets, the best way in these projects was to have good support from other people who will listen to you, and help you decide things for yourself., Summary Participation, voice and control have long been central concerns in the research at Norah Fry. This paper focuses on inclusive research relating to choice and control, as experienced by people with learning disabilities who use personal budgets and direct payments, and aims to question how the process of inclusive research can be linked to wider outcomes. The paper gives a brief overview of two studies carried out by Norah Fry Research Centre, which were in partnership with self-advocacy groups and employed people with learning disabilities, between 1999 and 2007. Both in research and in everyday life, we question individual notions of 'choice and control', showing how relational autonomy was at the heart, both of the process of the inclusive research and also of the outcomes and findings. However, all social research seems to have greatest impact when there is a 'bandwagon effect' of policy and practice initiatives. The discussion considers how the impact of inclusive research designs can be at policy, practice and 'direct' user level and is often achieved by people with learning disabilities having a voice at the dissemination stage. [ABSTRACT FROM AUTHOR]

Purpose – The purpose of this paper is to consider the experiences of carers caring for an adult child, particularly as they affect the transition from midlife into older age. It explores aspects affecting the vast majority of carers, such as accessing information and services, but focuses on the specific concerns of those caring for a child with a life-long disability or a child who acquires a long-term health problem in adolescence or adulthood. In the context of the introduction of the Care Act (2014) in England, the paper highlights ways in which support for carers could be improved. Design/methodology/approach – This paper draws on interview data which consisted of 86 face-to-face interviews with purposefully selected participants based in four local authorities. At the end of the study in 2014 the authors held a series of five focus groups for practitioners and carers to explore how the emerging findings chimed with their experiences and to refine the study’s messages for practice. The data from interviews are set in the context of policy and practice developments in social care in England. Findings – The paper draws attention to the need for practitioners to find ways of involving carers in decision making without compromising the rights to autonomy and choice on the part of the person cared for. Both those commissioning services and practitioners need to acknowledge that parent carers need assurances about the long-term viability and quality of the plans that are developed for the person they support. Research limitations/implications – This paper is drawn on interviews with carers and practitioners in four areas of England; most of the carers interviewed were white British and female. The implications of planning research and conducting research with family carers are explored and their similarities with practice encounters identified. Practical implications – The key practice point in this paper highlights the necessity of talking about the future with parent carers, making plans for possible and highly likely events, addressing mortality, and being aware of the potential for a deeply held sense of pessimism and unspoken distress among carers. Some participants seemed to feel that practitioners conveyed a sense that they were inadequate or unwilling to discuss these matters and practitioners who suspect this may apply to them or their team could usefully consider seeking skills development to improve their practice. Originality/value – This paper is the first to consider practice perspectives in the context of the Care Act (2014) and personal budgets in England relating to parent carers. [ABSTRACT FROM AUTHOR]

This paper examines three possible justifications for original ACMG recommendations to return incidental findings from whole exome or genome sequencing independent of patient preferences. The first two potential justifications, based on a patient's authentic values, then on harms to others, are founding lacking as a basis of justification for these recommendations. The third, grounded in analogous professional practices, might serve as a potential justification if several controversies can be avoided. However, given the nature of these controversies and the need to instill public trust in this newly emerging science, the paper finds that updated ACMG recommendations that recognize opt-out rights on behalf of patients is the most prudent, and justifiable, approach. [ABSTRACT FROM AUTHOR]

Consumer-directed care (CDC) is increasingly widespread among aged care service options in Organisation for Economic Co-operation and Development (OECD) countries. However, the evidence base regarding the programmatic and contextual factors that affect the outcome of CDC interventions is surprisingly small. This paper reports on a self-directed care approach for older Australians with complex care needs. A multimethods longitudinal comparative cohort study was employed comprising 4 survey tools and 56 semi-structured interviews. Participation rates were around 20%. A total of 185 (98 in the intervention and 87 in the control group) older people and carers were recruited at baseline. Eleven months later, 109 participants (59 in the intervention and 50 in the control group) completed the repeat measure. Attrition rates were around 40%. Data collection occurred between July 2010 and April 2012. The data suggest that intervention group participants were likely to be more satisfied with the way they were treated (P = 0.013), their care options (P = 0.014), the 'say' they had in their care (P < 0.001), the information they received regarding their care (P = 0.012), what they were achieving in life (P = 0.031), that the services changed their view on what could be achieved in life (P = 0.020) and with their standard of living (P = 0.008). The evaluation suggests that while only a very small segment of older people is interested in a voucher or cash option, a substantially larger group would like to have greater say over and more direct access to their care, without, however, assuming administrative and financial responsibilities. The paper concludes that a stepped capacity-building approach to CDC may improve the acceptability of CDC to older people and generate synergies that improve older people's care outcomes. [ABSTRACT FROM AUTHOR]

The article discusses positive and negative impacts of having personal access to medical genetic information. Topics covered include the launching of My Results online portal by Lifelabs in Ontario, Canada, genetics counseling and proper interpretation of results from the 23andMe genetic testing kit. Also cited are concerns of the Canadian Society for Medical Laboratory Science (CSMLS) and the position paper of the Canadian Association of Genetic Counsellors (CAGC) on medical information. INSET: So what did I learn about myself?.

Much of the discourse in the bioethics literature on what is often called 'cesarean delivery on maternal request' has focused on balancing respect for patient autonomy with attention to the short- and long-term risks of this procedure to maternal and neonatal well-being. And while there has been some analysis of the social and economic costs inherent in performing cesareans, much of the clinical and ethical analysis has concluded that, given the degree of risk to the mother and neonate from a primary or single repeat cesarean delivery, there is sufficient justification for pregnant women to request and obtain this procedure from obstetricians willing to meet such requests. However, these same analyses often caution that physicians should not offer these elective cesareans to all women, but only to those who initiate the request. This paper analyzes recommendations that do not promote universal access to these procedures and concludes that such a policy is ethically unjustifiable, as it treats women who do not inquire about such procedures differently. Depriving appropriate candidates-for example, healthy women who are good surgical candidates and desire only or two children-of information about elective cesarean delivery is a form of undue influence on women's decision-making.. [ABSTRACT FROM AUTHOR]

The main objective of this paper is to describe how quality of care may be improved during an involuntary admission process of patients suffering from Korsakoff's syndrome. It presents an empirically grounded analysis with different perspectives on 'doing good' during this process. Family carers', healthcare professionals' and legal professionals' ways of understanding and ordering this problematic situation appear very different. This could prevent patients from getting the proper care they need, with risk of more suffering and quality of life below the minimum acceptable. All this possibly lead to immoral dehumanizing situations. Firstly, the background of our empirical study is sketched. Secondly, the different perspectives on 'doing good' are summarized and compared. Thirdly, the tensions arising from the different conceptualizations of autonomy and different types of responsibilities of the actors are clarified. A common 'doing good' during involuntary admission necessitates removal of any tensions within the relational network by weighing and balancing the different perspectives on autonomy and the resulting responsibilities. With this in mind, we propose a renewed time/action table for involuntary admission, which tends to address all patients' needs at the right time. The solution presented might help healthcare professionals, who are squeezed in between patients, family carers, legal professionals and overall rules, to create practices in which patients suffering from Korsakoff's syndrome can maintain their dignity and receive the care they need. Earlier interventions, timely and adequate diagnosis, and diminishment of tensions between the different actors by fine-tuning their paradigmatic frameworks are suggested to be part of a solution. [ABSTRACT FROM AUTHOR]

Caesarean section by maternal request (CSMR) is the provision of a caesarean section when requested by the mother, with no medical indication. This paper aims to provide a narrative overview of CSMR to inform clinicians about the pertinent issues. It will examine current provision of CSMR in the UK and contextualise it among prevailing social and societal factors. It will explore in detail the reasons why women may choose caesarean section, and provide arguments for and against the provision of CSMR on the NHS. [ABSTRACT FROM AUTHOR]

Shared decision-making ( SDM), a collaborative process in which patients and providers make health care decisions together, taking into account the best scientific evidence available, as well as the patient's values and preferences, is being increasingly advocated as the optimal approach to decision-making for many health care decisions. The rapidly paced and often chaotic environment of the emergency department ( ED), however, is a unique clinical setting that offers many practical and contextual challenges. Despite these challenges, in a recent survey emergency physicians reported there to be more than one reasonable management option for over 50% of their patients and that they take an SDM approach in 58% of such patients. SDM has also been selected as the topic on which to develop a future research agenda at the 2016 Academic Emergency Medicine consensus conference, 'Shared Decision-making in the Emergency Department: Development of a Policy-relevant Patient-centered Research Agenda' (). In this paper the authors describe the conceptual model of SDM as originally conceived by Charles and Gafni and highlight aspects of the model relevant to the practice of emergency medicine. In addition, through the use of vignettes from the authors' clinical practices, the applicability of SDM to contemporary EM practice is illustrated and the ethical and pragmatic implications of taking an SDM approach are explored. It is hoped that this document will be read in advance of the 2016 Academic Emergency Medicine consensus conference, to facilitate group discussions at the conference. [ABSTRACT FROM AUTHOR]

Background: While client-centred practice has received wide support, it remains difficult to apply in many practice settings. Identified barriers include constraints on time, resources, and services imposed by healthcare policies. Healthcare professionals' prioritizing of client safety over (other) interests that clients may name may further restrict the application of client-centred practice. Discharge planning is one area where such considerations can conflict. Aim: This paper presents a secondary analysis of data examining the process of discharge in one Canadian rehabilitation setting. It examines how discourses of client-centred practice and of prioritizing safety were reflected in discharge planning with older adults and considers the implications of potential conflicts between these discourses. Method: Taking a critical bioethics perspective informed by relational autonomy theory, microethnographic case studies were used to examine discharge planning from the perspectives of older adult clients and healthcare professionals. Results: Healthcare professionals interpreted client-centred practice to require abiding by client wishes, as long as this was safe; furthermore prioritizing safety took precedence over other considerations in discharge planning. Conclusion and significance: Client-centred practice was not promoted in discharge planning processes in the research setting. Applying a relational autonomy lens to practice could promote approaches that better facilitate client-centred practice. [ABSTRACT FROM AUTHOR]

Ethical considerations for the use of unregistered interventions for Ebola virus disease have sparked considerable debate among academic and clinical ethicists. In August 2014 the World Health Organization (WHO) convened a panel of experts to discuss approaches to the outbreak in West Africa, with the goal of determining "whether it is ethical to use unregistered interventions with unknown adverse effects for possible treatment or prophylaxis”.1 The panel concluded that there would be an ethical imperative to provide such unregistered interventions if specific criteria could be met. This paper evaluates the WHO conclusion and argues that although it may be reasonable to provide unregistered interventions considering the circumstance, there is no clear ethical imperative to do so. [ABSTRACT FROM PUBLISHER]

This article questions how personal experiences from participating in physical activity may impact participation in other contexts of everyday life for people with physical disabilities. Seven databases were searched to identify papers published between 1987 and 2009. Fourteen qualitative studies were included in the final sample. Six themes were identified: learning social rules; being disabled in an able-bodied society; perception of identity; being part of a community, empowerment, maintenance and independence; theoretical framework for discussion is critical psychology and social learning theory. Physical activity seems to exert some impact on disability management, and athletic identity seems to be more empowered than disability identity. Disabled athletes seem to feel part of a special valued community. It is not evident if these experienced benefits imply an extended participation in society in general. Participation in physical activity seems to imply a psychological empowerment in a sports context that might lead to an extended participation in other contexts of everyday life. Physical competence achieved through physical activity may serve to help persons to stay socially connected, establish an ability to participate in activities and stay independent. Further research is needed to elucidate the question of this study. [ABSTRACT FROM PUBLISHER]

The Clubhouse model is a widely used approach to psychosocial rehabilitation that has been a pioneer in supporting recovery-oriented programmes. Little consideration has been given however, to the theories that guide research of the recovery practices used by Clubhouses. In this paper, we provide a description of self-determination theory, including its philosophical background followed by explanation of its relevance to health care and Clubhouse contexts. We argue that self-determination theory provides a robust social constructionist theoretical framework that is well-suited to informing research related to psychosocial rehabilitation, recovery-oriented practices and the Clubhouse model. [ABSTRACT FROM AUTHOR]

Background: Patient incentives for encouraging healthy behavior raise a number of ethical concerns: Do they target the vulnerable? Do they involve psychological manipulation? Do they undermine intrinsic motivation? Purpose: To the purpose of this paper is to provide an overview of ethical challenges raised by patient incentives and incentive programs and develop a systematic approach to understanding and analyzing these ethical challenges. Method: Ethical considerations raised by patient incentives can be broadly grouped into two kinds: medical ('patient-oriented') and public health ('constituent-oriented') concerns. Ethical frameworks suitable to these kinds of concerns are explored. Results: Two ethical frameworks are applied to the challenges raised by patient incentives: (1) Incentives are assessed in terms of personal and social responsibility for health; and (2) incentives are assessed as elements of normatively structured clinical relationships (e.g., the traditional patient-clinician relationship). Conclusion: A better understanding of ethical concerns and the resources available within the personal responsibility and clinical encounter frameworks suggest complementary guidance may be available for approaching many of the ethical issues raised by patient incentives. [ABSTRACT FROM AUTHOR]

In China, there are three basic clinical decision-making modes for patients, namely patients' autonomous decision-making mode, family decision-making mode and patient and family codetermination. They were produced under the unique background of Chinese medicine, Confucian philosophy and law in China. In this paper, the concepts, advantages and disadvantages of these three decision-making modes were analyzed. In addition, some suggestions were put forward for the improvement. The first is that we suggest to establish standards for choosing decision-making modes; the second is to further learn and publicize relevant laws; thirdly, the legal system needs to be further refined; and the last one is to carry out ethical ward round. [ABSTRACT FROM AUTHOR]

Purpose: In light of the increasing elderly population and the growing demand for home care, the potential of robot support is given increasing attention. In this paper, an inventory of activities was made that threaten independent living of elderly when becoming problematic. Results will guide the further development of an existing service robot, the Care-O-bot®. Method: A systematic literature search of PubMed was performed, focused on the risk factors for institutionalization. Additionally, focus group sessions were conducted in the Netherlands, United Kingdom and France. In these focus group sessions, problematic activities threatening the independence of elderly people were discussed. Three separate target groups were included in the focus group sessions: (1) elderly persons ( n = 41), (2) formal caregivers ( n = 40) and (3) informal caregivers ( n = 32). Results: Activities within the International Classification of Functioning domains mobility, self-care, and interpersonal interaction and relationships were found to be the most problematic. Conclusions: A distinct set of daily activities was identified that may threaten independent living, but no single activity could be selected as the main activity causing a loss of independence as it is often a combination of problematic activities that is person-specific. Supporting the problematic activities need not involve a robotic solution. [ABSTRACT FROM AUTHOR]

Ghostwriting in its various forms has received critical scrutiny from medical ethicists, journal editors, and science studies scholars trying to explain where ghostwriting goes wrong and ascertain how to counter it. Recent analyses have characterized ghostwriting as plagiarism or fraud, and have urged that it be deterred through stricter compliance with journal submission requirements, conflict of interest disclosures, author-institutional censure, legal remedies, and journals' refusal to publish commercially sponsored articles. As a supplement to such efforts, this paper offers a critical assessment of medical ghostwriting as contrary to good patient care, on the grounds that it contradicts established general principles guiding clinical ethics. Specifically, I argue that ghostwriting undermines trust relationships between authors and their readers, and between these readers and their trusting patients, and in so doing contradicts the duty of respect for patient autonomy by obstructing informed consent. For this reason, complicity in ghostwriting practices should be understood as a violation of the professional ethical duties of physicians and other healthcare workers. [ABSTRACT FROM AUTHOR]

Aim This paper is a report of an analysis of the concept of patient autonomy Background Many problems regarding patient autonomy in healthcare contexts derive from the patient's dependent condition as well as the traditional authoritarian position of healthcare professionals. Existing knowledge and experience reveal a lack of consensus among nurses regarding the meaning of this ethical concept. Design Concept analysis. Data Sources Medline, CINAHL, The Cochrane Library and Psyc INFO were searched (2005-June 2013) using the search blocks 'autonomy', 'patient' and 'nursing/caring'. A total of 41 articles were retrieved. Review Methods The Evolutionary Method of Concept Analysis by Rodgers was used to identify and construct the meaning of the concept of patient autonomy in a caring context. Results Five attributes were identified, thus creating the following descriptive definition: 'Patient autonomy is a gradual, time-changing process of (re-)constructing autonomy through the interplay of to be seen as a person, the capacity to act and the obligation to take responsibility for one's actions'. Patient vulnerability was shown to be the antecedent of patient autonomy and arises due to an impairment of a person's physical and/or mental state. The consequences of patient autonomy were discussed in relation to preserving control and freedom. Conclusion Patient autonomy in a caring context does not need to be the same before, during and after a care episode. A tentative model has been constructed, thus extending the understanding of this ethical concept in a caring context. [ABSTRACT FROM AUTHOR]

In any healthcare organization care providers often encounter ethical dilemmas while dealing with patients. A case study presented ethical dilemma faced by a nurse who was caring for an old female diagnosis with severe interstitial Lung Disease (ILD). The patient verbally expressed her will not to give any aggressive treatment and wish a comfort end of life. Her son desired to do all possible treatment and ultimately the patient died with painful experiences. The ethical dilemma demonstrated whether to respect the patient' autonomy or refuse and do aggressive treatment. This paper discusses a case study and present Volbrecht's framework of virtue ethics to analyze the ethical dilemma. [ABSTRACT FROM AUTHOR]

Policy PointsPatients and families can identify clinically relevant errors, including "blindspots"—safety hazards that are difficult for clinicians or organizations to see.Health information transparency, including patient access to electronic visit notes, now federally mandated in the US and the subject of policy debate worldwide, creates a new opportunity to engage patients in diagnostic safety. However, not all patients access notes.Patient identification of blindspots in their notes underscores the need to systematically and equitably engage willing patients in safety, promote patient "good catches," and establish routine systems for patient feedback to help avoid preventable diagnostic errors and delays. Context: Policy shifts toward health information transparency provide a new opportunity for patients to contribute to diagnostic safety. We investigated whether sharing clinical notes with patients can support identification of "diagnostic safety blindspots"—potentially consequential breakdowns in the diagnostic process that may be difficult for clinical staff to observe. Method: We used mixed methods to analyze patient‐reported ambulatory documentation errors among 22,889 patients at three US health care centers who read ≥ 1 visit note(s). We identified blindspots by tailoring a previously established taxonomy. We used multiple regression analysis to identify factors associated with blindspot identification. Findings: 774 patients reported a total of 962 blindspots in 4 categories: (1) diagnostic misalignments (n = 421, 43.8%), including inaccurate symptoms or histories and failures or delay in diagnosis; (2) errors of omission (38.1%) including missed main concerns or next steps, and failure to listen to patients; (3) problems occurring outside visits (14.3%) such as tests, referrals, or appointment access; and (4) multiple low‐level problems (3.7%) cascading into diagnostic breakdowns. Many patients acted on the blindspots they identified, resulting in "good catches" that may prevent potential negative consequences. Older, female, sicker, unemployed or disabled patients, or those who work in health care were more likely to identify a blindspot. Individuals reporting less formal education; those self‐identifying as Black, Asian, other, or multiple races; and participants who deferred decision‐making to providers were less likely to report a blindspot. Conclusion: Patients who read notes have unique insight about potential errors in their medical records that could impact diagnostic reasoning but may not be known to clinicians—underscoring a critical role for patients in diagnostic safety and organizational learning. From a policy standpoint, organizations should encourage patient review of visit notes, build systems to track patient‐reported blindspots, and promote equity in note access and blindspot reporting. [ABSTRACT FROM AUTHOR]

Rationale, Aims and Objectives: Sharing aspects of the traditional medical record with patients has been successful in primary and antenatal care, but has not been investigated in the UK inpatient setting. Our aim was to evaluate the impact on patient and clinician experience of providing patients with a written lay summary of their care‐plan in the acute care setting. Method: We carried out a qualitative interview study on two acute medicine wards in an NHS University Teaching Hospital for a 4‐week period in 2019. A summary record, designed in response to suggestions from doctors and patients from a previous study, was distributed to patients on the first ward round after admission. Eligible participants included all doctors and nurses working on and all patients and their families attending the acute medical units; patients were excluded if they lacked capacity to consent or were under 18. We interviewed 20 patients, 10 relatives, 10 doctors and 7 nurses. Results: Patients felt that the summary improved their ability to remember details about their care so they could more accurately and easily update their relatives. They did not feel that the summary induced anxiety. Patient‐doctor communication was improved: patients felt empowered to ask more questions and doctors felt that it solidified their plan and encouraged them to avoid medical jargon. Most patients felt the summary included the 'right' amount of information. Healthcare professionals were more concerned about the risk of breaching confidentiality than patients. Doctors felt that providing summaries was time‐consuming; there were differing opinions about whether this was a worthwhile investment of time. Clinicians recognized that the traditional medical record has many roles. Conclusions: A summary record could empower patients and improve patient‐doctor communication but would require additional clinician and administrative time. [ABSTRACT FROM AUTHOR]

In this article, we draw on Michael Lipsky's work on street‐level bureaucrats and discretion to analyse a real case setting comprising an interview study of 30 Swedish doctors regarding their experiences of changes in clinical work following patients being given access to medical records information online. We introduce the notion of invisibilitywork to capture how doctors exercise discretion to preserve the invisibility of their work, in contrast to the well‐established notion of invisible work, which denotes work made invisible by parties other than those performing it. We discuss three main forms of invisibility work in relation to records: omitting information, cryptic writing and parallel note writing. We argue that invisibility work is a way for doctors to resolve professional tensions arising from the political decision to provide patients with online access to record information. Although invisibility work is understood by doctors as a solution to government‐initiated visibility, we highlight how it can create difficulties for doctors concerning accountability towards patients, peers and authorities. [ABSTRACT FROM AUTHOR]

Life-extending treatment, in the form of artificial nutrition and hydration, is often provided to people in permanent vegetative states (PVS) in England and Wales for many years, even when their family believes the patient would not want it and despite the fact that no court in the UK has ever found in favour of continuing such treatment for a patient with a confirmed PVS diagnosis. The first half of this article presents a close analysis of the recent case of Cumbria NHS Clinical Commissioning Group v Miss S and Ors [2016] EWCOP 32. It examines the causes of delay in bringing this case to court and reaching a final judgment. It draws not only on the published judgment, but also on the two authors' involvement in supporting the family (before, during and subsequent to the court hearings) as a result of their academic and policy-related work in this area. This includes conversations with the family and with members of the clinical and legal teams, and observations in court. The second part of the article draws out the ethical and practical implications of the findings for theory and policy and suggests ways forward in relation to (a) the provision and inspection of care for these patients; (b) legal practice in relation to 'best interests' and (c) the perceived requirement under English law for a court application before life-prolonging treatment can be withdrawn from PVS patients-even in the absence of any 'in principle' opposition. [ABSTRACT FROM AUTHOR]

This article examines how the wishes, feelings, values and beliefs of adults lacking capacity can be evaluated and the extent to which they are given effect in best interests decision-making. One way of fulfilling the clinician’s legal responsibilities to take a patient’s preferences into account is to explicitly link these to the notion of narrative. Narratives provide a compelling grounding and give weight to views and values that may have been informally and consistently expressed in the past. An evaluation of recent case law suggests that the trajectory of a person’s life, their character and personality, and the perspectives of those with whom the patient has valued relationships are given increasing judicial recognition. Attending to the narrative of the patient could lead to a more sophisticated judgement of best interests than an objective ‘balance sheet’ approach would allow and enable greater alignment with the UN Convention on the Rights of Persons with Disabilities. [ABSTRACT FROM PUBLISHER]

Campaigns seeking to help people with depression can be effective, but they can also backfire. Psychological reactance is proposed as a partial explanation. Two experimental studies examined the effect of two depression messages (i.e., autonomy-supportive language, controlling language) for participants (n = 2027,n = 777) with varying levels of depressive symptomatology. For Study 1, two versions of a print public service announcement about seeking help for depression served as the experimental stimulus. Study 2 used an existing video public service announcement about seeking help for depression, but the text was altered to create the two conditions. In both studies, increased depressive symptomatology was associated with reduced help-seeking attitudes and intentions, as well as greater state reactance to a public service announcement about depression. Increased state reactance mediated the relationship between increased depressive symptomology and unfavorable help-seeking outcomes. Further, across the two studies, participants with high levels of depressive symptomatology who were exposed to the autonomy-supportive language ad reported either as much, or more, state reactance than participants with high levels of depressive symptomatology who were in the control condition. These results warn that language perceived as autonomy-supportive by people without depression might be perceived as controlling among people with depression. [ABSTRACT FROM PUBLISHER]

Aim To investigate the associations of self-perceived competence in diabetes management and autonomy support from healthcare providers with diabetes distress in adults with Type 1 diabetes mellitus that is not optimally controlled [HbA1c ≥ 64 mmol/mol (8.0%)]. Methods This cross-sectional study comprised blood sampling and three self-report questionnaires, the Problem Areas in Diabetes scale, the Perceived Competence in Diabetes Scale and a measure of autonomy support by healthcare providers, the Health Care Climate Questionnaire. We fitted blockwise linear regression models to assess the associations between Problem Areas in Diabetes score and the variables of interest (autonomy support and perceived diabetes competence), controlling for clinical and sociodemographic variables. Results Of the study sample [ n = 178; mean age 36.7 (±10.7) years], 31.5% had long-term complications and 43.2% reported elevated (≥40) Problem Areas in Diabetes scores. A significant negative association was found between autonomy support and Problem Areas in Diabetes score (B = -3.61, P = 0.001), indicating that lower autonomy support was associated with greater diabetes distress. When perceived competence was controlled, it mediated the association of autonomy support with diabetes distress, reducing it to non-significance. There was a significant negative association between perceived competence and Problem Areas in Diabetes score (B = -8.89, P < 0.001), indicating that lower perceived competence was associated with greater perceived distress. Conclusions There was an indirect (fully mediated) relationship between autonomy support and diabetes distress; autonomy support was associated with increased perceived competence, which, in turn, was associated with reduced distress. Healthcare providers' communication styles enhancing perceived competence through autonomy support may contribute to effective treatment for people with Type 1 diabetes and suboptimum glycaemic control. [ABSTRACT FROM AUTHOR]

Adults with dysphagia experience difficulties swallowing food and fluids with potentially harmful health and psychosocial consequences. Speech pathologists who manage patients with dysphagia are frequently required to address ethical issues when patients' food culture and/ or preferences are inconsistent with recommended diets. These issues incorporate complex links between food, identity and social participation. A composite case has been developed to reflect ethical issues identified by practising speech pathologists for the purposes of illustrating ethical concerns in dysphagia management. The case examines a speech pathologist's role in supporting patient autonomy when patients and carers express different goals and values. The case presents a 68-year-old man of Australian/Italian heritage with severe swallowing impairment and strong values attached to food preferences. The case is examined through application of the dysphagia algorithm, a tool for shared decision-making when patients refuse dietary modifications. Case analysis revealed the benefits and challenges of shared decision-making processes in dysphagia management. Four health professional skills and attributes were identified as synonymous with shared decision making: communication, imagination, courage and reflection. [ABSTRACT FROM AUTHOR]

This article discusses the notion of justice from a capabilities approach. We undertake an empirical analysis of the concepts of justice held by healthcare personnel, gleaned from a qualitative analysis of interviews on the subject of ethical dilemmas in everyday practice. The article states that Justice undoubtedly presents a work in progress, which implicates the link between justice as capability and human dignity. We empirically found a contrast between the views of justice based on the patient's own perceptions and those based on the perceptions of healthcare personnel. We establish the kind of actions, communication skills and justice required to build a stronger relationship between patients and healthcare professionals, which would improve prognosis, treatment efficiency and therapeutic adhesion. [ABSTRACT FROM AUTHOR]

The concepts of placebos and placebo effects refer to extremely diverse phenomena. I recommend dissolving the concepts of placebos and placebo effects into loosely related groups of specific mechanisms, including (potentially among others) expectation-fulfillment, classical conditioning, and attentional-somatic feedback loops. If this approach is on the right track, it has three main implications for the ethics of informed consent. First, because of the expectation-fulfillment mechanism, the process of informing cannot be considered independently from the potential effects of treatment. Obtaining informed consent influences the effects of treatment. This provides support for the authorized concealment and authorized deception paradigms, and perhaps even for outright deceptive placebo use. Second, doctors may easily fail to consider the potential benefits of conditioning, leading them to misjudge the trade-off between beneficence and autonomy. Third, how attentional-somatic feedback loops play out depends not only on the content of the informing process but also on its framing. This suggests a role for libertarian paternalism in clinical practice. [ABSTRACT FROM AUTHOR]

This article focuses on patients' participation in decision-making in meetings with healthcare professionals in a healthcare system, based on neoliberal regulations and ideas. Drawing on two constructed empirical cases, primarily from the perspective of patients, this article analyses and discusses the clinical practice around decision-making meetings within a Foucauldian perspective. Patients' participation in decision-making can be seen as an offshoot of respect for patient autonomy. A treatment must be chosen, when patients consult physicians. From the perspective of patients, there is a tendency for healthcare professionals to supply the patients with the information that they think are necessary for them to make their own decision. But patients do not always want to be a 'customer' in the healthcare system; they want to be a patient, consulting an expert for help and advice, which creates resistance to some parts of the decision-making process. Both professionals and patients are subject to the structural frame of the medical field, formed of both neoliberal framework and medical logic. The decision-making competence in relation to the choice of treatment is placed away from the professionals and seen as belonging to the patient. A 'projectification' of the patient occurs, whereby the patient becomes responsible for his/her choices in treatment and care and the professionals support him/her with knowledge, preferences, and alternative views, out of which he/she must make his/her own choices, and the responsibility for those choices now and in the future. At the same time, there is a tendency towards de-professionalization. In that light, participation of patients in decision-making can be regarded as a tacit governmentality strategy that shapes the location of responsibility between individual and society, and independent patients and healthcare professionals, despite the basically desirable, appropriate, and necessary idea of involving patients in their own situations from a humanistic perspective. [ABSTRACT FROM AUTHOR]

Many adults that are severely mentally ill or intellectually or developmentally disabled have state- or court-appointed guardians because they are unable to make sound and safe decisions regarding their lives because of impaired functionality or cognitive abilities. This article will use vignettes to illustrate the types of ethical and moral conflicts that can potentially arise between client and guardian and to discuss existing disconnects between basic human rights and issues regarding safety when clients are in service with a supported living agency. Ethical dilemmas abound when an individual makes assumptions and decisions regarding the lives of another, so where that line is or should be drawn can be a difficult one to conceptualize. This article will illustrate how acting as a client-centered agency may often go against the perceived “good” of the client, and who ultimately has the right to determine quality-of-life issues within the theoretical constructs of client-centered support. [ABSTRACT FROM PUBLISHER]

Background: Despite media and academic interest on assisted dying in dementia, little is known of the views of those directly affected. Aim: This study explored the views of former carers on assisted dying in dementia. Design: This was a qualitative study using thematic analysis. Setting/participants: A total of 16 former carers of people with dementia were recruited through national dementia charities and participated in semi-structured interviews. Results: While many supported the individual’s right to die, the complexity of assisted dying in dementia was emphasized. Existential, physical, psychological and psychosocial aspects of suffering were identified as potential reasons to desire an assisted death. Most believed it would help to talk with a trained health professional if contemplating an assisted death. Conclusion: Health workers should be mindful of the holistic experience of dementia at the end of life. The psychological and existential aspects of suffering should be addressed, as well as relief of physical pain. Further research is required. [ABSTRACT FROM AUTHOR]

Most people who endorse physician-assisted suicide are against commercially assisted suicide - a suicide assisted by professional non-medical providers against payment. The article questions if this position - endorsement of physician-assisted suicide on the one hand and rejection of commercially assisted suicide on the other hand - is a coherent ethical position. To this end the article first discusses some obvious advantages of commercially assisted suicide and then scrutinizes six types of argument about whether they can justify the rejection of commercially assisted suicide while simultaneously endorsing physician-assisted suicide. The conclusion is that they cannot provide this justification and that the mentioned position is not coherent. People who endorse physician-assisted suicide have to endorse commercially assisted suicide as well, or they have to revise their endorsement of physician-assisted suicide. [ABSTRACT FROM AUTHOR]

Patients with a history of traumatic life events can become distressed or re-traumatized as the result of healthcare experiences. These patients can benefit from trauma-informed care that is sensitive to their unique needs. However, despite the widespread prevalence of traumatic life experiences such as sexual assault and intimate partner violence, trauma-informed care has not been widely researched or implemented. The purpose of this synthesis of the literature is to examine existing research on trauma-informed care for survivors of physical and sexual abuse. The following themes are discussed: trauma screening and patient disclosure, provider-patient relationships, minimizing distress and maximizing autonomy, multidisciplinary collaboration and referrals, and trauma-informed care in diverse settings. This synthesis also explores implications for trauma-informed care research, practice and policy. The themes identified here could be used as a framework for creating provider and survivor educational interventions and for implementing trauma-informed care across disciplines. The findings of this synthesis support further research on patient and provider experiences of trauma-informed care, and research to test the efficacy of trauma-informed care interventions across healthcare settings. Universal implementation of trauma-informed care can ensure that the unique needs of trauma survivors as patients are met, and mitigate barriers to care and health disparities experienced by this vulnerable population. [ABSTRACT FROM AUTHOR]

The context of care in assertive community treatment (ACT) can be precarious and generate ethical issues involving the principles of autonomy and paternalism. This focus group study examined case managers’ situated accounts of moral reasoning. Our findings show how they expressed strong moral obligation towards helping the clients. Their moral reasoning reflected a paternalistic position where, on different occasions, the potential benefits of their interventions would be prioritised at the expense of protecting the clients’ personal autonomy. The case managers’ reasoning emphasised situational awareness, but there was a risk of supporting paternalistic interventions and denying the clients’ right to autonomy. [ABSTRACT FROM AUTHOR]

The Convention on the Rights of Persons with Disabilities is increasingly seen as driving a paradigm shift in mental health law, particularly in relation to the understanding that it requires a shift from substituted to supported decisions. This article identifies two competing moral commitments implied by this shift, both of which appeal to the notion of autonomy. It is argued that because of these commitments the Convention is in tension with more general calls in the medical ethics literature for preserving patient autonomy through support. The competing commitments within the Convention also present a particular challenge in putting the support it requires into practice. A discursive control account of freedom is used to develop some practical guidelines for navigating this new moral territory. [ABSTRACT FROM AUTHOR]

An essay concerning ethical issues in establishing an accountable care organization focusing on fiduciary responsibilities, nonmaleficence, and autonomy is presented.

Mobile health (mHealth) technology can be a valuable tool in the management of chronic illnesses, including HIV. Qualitative research methods were used to identify the desired content and features of a mobile app for meeting and improving the healthcare needs of persons living with HIV (PLWH). We conducted six focus group sessions with 50 English-or Spanish-speaking PLWH in New York City. To inform data analysis and to illustrate how mHealth technology can be used as a persuasive strategy for improving the health of PLWH, we integrated Fogg's functional role triad for computing technology model with the self-determination theory to illustrate how mHealth technology can be used as a persuasive strategy for improving the health of PLWH. Participants suggested several tools for meeting their healthcare needs, including: reminders/alerts, lab results tracking, and notes on health status. mHealth technology can function as a social actor by providing chat boxes/forums, testimonials of lived experiences, and personal outreach. Examples of media that can be used as a persuasive technology include games/virtual rewards, coding of health tasks, and simulations on how to connect with PLWH. Findings from these focus groups can be used to design a mobile app for PLWH that is targeted to meet their healthcare needs. [ABSTRACT FROM AUTHOR]

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Although numerous studies have documented the concurrent association between parental overcontrol and child anxiety, few have examined overcontrol for its prospective association with children's anxiety. In this study we evaluate whether parental overcontrol prospectively predicts children's anxiety symptoms across the transition to early adolescence (H1), whether parental overcontrol mediates the association between parent and child anxiety (H2), and whether parental overcontrol mediates the association between child avoidant coping and child anxiety (H3). School-aged children ( N = 102) and their mothers and fathers completed this two wave study. At Time 1, each family member reported on his/her own anxiety symptoms (children: State-Trait Anxiety Inventory for Children; parents: Symptom Checklist-90 Revised), parents reported on their overcontrolling parenting behavior (USC Parental Overcontrol Scale) and children reported on their avoidant coping (Children's Coping Strategies Checklist- Revision 1). Children reported on their anxiety symptoms two-and-a-half years later using the same scale. Results indicated that having at least one parent who reported highly overcontrolling parenting was associated with persistent anxiety symptoms across this developmental transition. When both mother and father overcontrol were evaluated in the same models, only maternal overcontrol acted as an indirect effect explaining the prospective associations (H2) between maternal and child anxiety and (H3) between child avoidant coping and child anxiety. Our study provides evidence for the prospective association between parental overcontrol and child anxiety and suggests that maternal overcontrol is a mechanism underlying the association between maternal and child anxiety. [ABSTRACT FROM AUTHOR]

Accessible summary Seclusion in psychiatric inpatient care means confining service users in a locked room., Service users and staff seem to have different opinions on the usefulness of seclusion., This is possibly the first time when two mental health nurses went voluntarily into seclusion and reported their experiences., The nurses felt that the seclusion room was inhumane and proposed improvements to seclusion in general and to the seclusion facilities in particular., Abstract Seclusion in psychiatric hospital care refers to isolating a service user from other service users and staff, most often in a locked and unfurnished room. Service users' experiences of seclusion are mostly negative, and although some have seen a rationale for its use, mental health nurses should be encouraged to evaluate current seclusion practices from the service user's perspective. In this small-scale experiment, two mental health nurses were voluntarily secluded for 24 h. The aim was to explore the experience of being secluded, to understand and evaluate the impact of seclusion in greater detail, and to encourage discussion on one of the controversies in mental health nursing. To the best of our knowledge, this is the first attempt to evaluate the impact of seclusion based on mental health nurses' firsthand experiences. The nurses received usual seclusion treatment and described their experiences of this every 6 h. Based on the nurses' experiences, seclusion, even in voluntary, safe and planned circumstances, may increase anxiety and frustration. Seclusion was viewed negatively and the physical environment was considered inhumane. The nurses offered some practical suggestions for updating seclusion practices and re-designing seclusion facilities. Mental health nurses, who frequently decide on and invariably implement seclusion, are key to improving seclusion practices. [ABSTRACT FROM AUTHOR]

Background This study examines how the term 'self-care' imported from health promotion has been used in the context of patient education interventions for paediatric patients with type 1 diabetes. Methods Thirty articles over the last decade were analysed, using a qualitative method of thematic coding and categorizing. Results The term 'self-care' has been mainly used as a synonym for self-management of one's condition and treatment. Indeed, the activities performed by paediatric patients independently or with the help of their parents under the term 'self-care' fail to explicitly take into account the general health and life dimensions of self-care, as defined in health promotion. Although such dimensions are implicitly present when it comes to define the parents' and health-care providers' roles in supporting the children's emerging self-care capacity, their importance is acknowledged as a way of strengthening the children's and their families' capacity to respond to illness demands, rather than in relation to their general well-being. Conclusion The discourse on self-care in the field of paediatric diabetes therefore appears to be oriented more towards disease and prevention, rather than health promotion. The psychosocial dimension of self-care should be particularly investigated, as young patients need to be supported in their efforts to gain autonomy not only in relation to the management of their condition, but in their lives in general. [ABSTRACT FROM AUTHOR]

The use of coercion in mental health care is not self-evident and requires moral justification. A joint understanding is difficult to achieve, because patients and health professionals often evaluate coercion differently. The present study aims to discuss patients' 'moral' evaluation of coercion. We believe that such a focus can form the basis for a better and more differentiated understanding of how we evaluate coercion. This is a qualitative study based on participant observation and interviews with patients. In order to focus specifically on the moral evaluation of coercion, we looked within patients' narratives to examine whether we could differentiate between how they experienced coercion and how they morally evaluated its use, and how they envision/describe good coercion. We found that patients differentiated implicitly between experiences and moral evaluation. The findings have been ordered into three types of reactions: agreeing and accepting, fighting or resisting, and resignation. Further reflection upon patients' positive and negative moral evaluations of coercion resulted in the formulation of different concrete elements at three levels: threshold elements, process elements, and empathic elements. These elements helped us to understand what these patients considered 'good coercion'. The implications are that good clinical practice cannot be separated from the formal, moral evaluation of coercion. A differentiated moral understanding of coercion can form the basis for better and more sensitive communication about coercion among all those involved. A more respectful dialogue on the moral evaluation of coercion might also raise awareness during both the decision-making process and the actual practising of coercion. [ABSTRACT FROM AUTHOR]

The conception of the doctor-patient relationship under Australian law has followed British common law tradition whereby the relationship is founded in a contractual exchange. By contrast, this article presents a rationale and framework for an alternative model-a 'Trust Model'-for implementation into law to more accurately reflect the contemporary therapeutic dynamic. The framework has four elements: (i) an assumption that professional conflicts (actual or perceived) with patient safety, motivated by financial or personal interests, should be avoided; (ii) an onus on doctors to disclose these conflicts; (iii) a proposed mechanism to contend with instances where doctors choose not to disclose; and (iv) sanctions for non-compliance with the regime. [ABSTRACT FROM AUTHOR]

Objective: The most simple and common approach in providing standing and walking by subjects with spinal cord injury (SCI) is the use of mechanical orthoses. These include traditional orthoses, medial linkage orthoses (MLOs) and reciprocating gait orthoses (RGOs). Independence, energy expenditure, gait parameters, system reliability and cosmesis are important factors in orthotic design. The aim of this review was to compare the evidence of existing mechanical orthoses to that of other types regarding these factors . Methods: The preferred reporting items for systematic reviews and meta-analyses (PRISMA) method was used by an experience researcher based on selected keywords and their composition and an electronic search was performed in well-known databases. Results: Twenty articles were selected for final evaluation. Many were case studies, and also had limited and heterogeneous sample sizes with different instruments used for evaluation. The results of the analysis demonstrated that independence and cosmesis are improved when using MLOs, but gait parameters, energy expenditure and stability are all improved when using RGOs. Conclusion: Those mechanical orthoses which have reciprocal motion and congruency between the anatomical and orthotic joints have been shown to provide positive effects on patient lifestyles. However, further improvement is needed to more effectively meet the needs of SCI patients. [ABSTRACT FROM AUTHOR]