Malm and colleagues (2008) consider (and reject) five arguments putatively justifying the idea that healthcare workers (HCWs) have a duty to treat (DTT) during a pandemic. We do not have sufficient...

American Academy of Pediatrics (AAP) and American College of Medical Genetics (ACMG) recently provided two recommendations about predictive genetic testing of children. The Clinical Sequencing Exploratory Research Consortium's Pediatrics Working Group compared these recommendations, focusing on operational and ethical issues specific to decision making for children. Content analysis of the statements addresses two issues: (1) how these recommendations characterize and analyze locus of decision making, as well as the risks and benefits of testing, and (2) whether the guidelines conflict (...) or come to different but compatible conclusions because they consider different testing scenarios. These statements differ in ethically significant ways. AAP/ACMG analyzes risks and benefits using best interests of the child and recommends that, absent ameliorative interventions available during childhood, clinicians should generally decline to order testing. Parents authorize focused tests. ACMG analyzes risks and benefits using the interests of the child and other family members and recommends that sequencing results be examined for additional variants that can lead to ameliorative interventions, regardless of age, which laboratories should report to clinicians who should contextualize the results. Parents must accept additional analysis. The ethical arguments in these statements appear to be in tension with each other. (shrink)

Since Darwin, the idea of psychological continuity between humans and other animals has dominated theory and research in investigating the minds of other species. Indeed, the field of comparative psychology was founded on two assumptions. First, it was assumed that introspection could provide humans with reliable knowledge about the causal connection between specific mental states and specific behaviors. Second, it was assumed that in those cases in which other species exhibited behaviors similar to our own, similar psychological causes (...) were at work. In this paper. we show how this argument by analogy is flowed with respect to the case of second-order mental states. As a test case, we focus on the question of how other species conceive of visual attention, and in particular whether chimpanzees interpret seeing as a mentalistic event involving internal states of perception, attention, and belief. We conclude that chimpanzees do not reason about seeing in this manner, and indeed, there is considerable reason to suppose that they do not harbor representations of mental states in general. We propose a reinterpretation model in which the majority of the rich social behaviors that humans and other primates share in common emerged long before the human lineage evolved the psychological means of interpreting those behaviors in mentalistic terms. Although humans, chimpanzees, and most other species may be said to possess mental states, humans alone may have evolved a cognitive specialization for reasoning about such states. (shrink)

A large proportion of nursing home residents in developed countries come from ethnic minority groups. Unmet care needs and poor quality of care for this resident population have been widely reported. This systematic review aimed to explore social conditions affecting ethnic minority residents' ability to exercise their autonomy in communication and care while in nursing homes. In total, 19 studies were included in the review. Findings revealed that ethno‐specific nursing homes create the ideal social condition (...) for residents to express their care needs and preferences in a language of choice. In nonethno‐specific nursing homes, staff cultural competence and nursing home commitment to culturally safe care are crucial social conditions that enable this group of residents to fulfil their autonomy in communicating and in participating in their care. In contrast, social conditions that undermine residents' ability to express their care needs and preferences include low levels of staff cultural awareness and cultural desire, negative attitudes towards residents and limited organisational support for staff to improve culturally responsive and culturally safe care. In conclusion, it is important to optimise the social conditions to support ethnic minority residents to communicate their care needs and preferences. (shrink)

Ethics support is called for to improve the quality of care in elderly institutions. Various forms of ethics support are presented, but the needs for ethics support remain unknown. Using a mixed-methods design, this article systematically investigates the specific needs for ethics support in elderly care. The findings of two surveys, two focus groups and 17 interviews demonstrate that the availability of ethics support is limited. There is a need for ethics support, albeit not unconditionally. Advice-based (...) forms of ethics support are less appropriate as they are removed from practice. Ethics support should be tailored to the often mundane and easily overlooked moral issues that arise in long-term care. Attention should also be given to the learning styles of nurses who favour experiential learning. Raising awareness and developing a climate of openness and dialogue are the most suitable ways to deal with the mundane moral issues in elderly care. (shrink)

Background: Family members are often required to act as substitute decision-makers when health care or research participation decisions must be made for an incapacitated relative. Yet most families are unable to accurately predict older adult preferences regarding future health care and willingness to engage in research studies. Discussion and documentation of preferences could improve proxies' abilities to decide for their loved ones. This trial assesses the efficacy of an advance planning intervention in improving the accuracy of substitute decision-making (...) and increasing the frequency of documented preferences for health care and research. It also investigates the financial impact on the healthcare system of improving substitute decision-making.Methods/DesignDyads (n = 240) comprising an older adult and his/her self-selected proxy are randomly allocated to the experimental or control group, after stratification for type of designated proxy and self-report of prior documentation of healthcare preferences. At baseline, clinical and research vignettes are used to elicit older adult preferences and assess the ability of their proxy to predict those preferences. Responses are elicited under four health states, ranging from the subject's current health state to severe dementia. For each state, we estimated the public costs of the healthcare services that would typically be provided to a patient under these scenarios. Experimental dyads are visited at home, twice, by a specially trained facilitator who communicates the dyad-specific results of the concordance assessment, helps older adults convey their wishes to their proxies, and offers assistance in completing a guide entitled My Preferences that we designed specifically for that purpose. In between these meetings, experimental dyads attend a group information session about My Preferences. Control dyads attend three monthly workshops aimed at promoting healthy behaviors. Concordance assessments are repeated at the end of the intervention and 6 months later to assess improvement in predictive accuracy and cost savings, if any. Copies of completed guides are made at the time of these assessments.DiscussionThis study will determine whether the tested intervention guides proxies in making decisions that concur with those of older adults, motivates the latter to record their wishes in writing, and yields savings for the healthcare system.Trial RegistrationISRCTN89993391. (shrink)

Some care home residents with dementia have the capacity, some do not. Staff may need to make decisions about administering care interventions to someone whom they believe lacks the capacity to consent to it, but also resists the intervention. Such intervention can be termed forced care. The literature on forced care (especially reflecting empirical work) is scant. This study aims to investigate how the ethics of forced care is navigated in practice, through ten semi-structured interviews (...) with staff in 1 care home in the North East of England. Participants generally avoided situations where there was overt restraint, taking a flexible approach by either modifying their own behaviour or using covert techniques. The underlying justification given for decisions or actions tended to be that the recipients of care should be valued because of their intrinsic worth as fellow human beings. Participants attempted to put themselves in the position of the resident or think about what a beloved elderly relative would want. The intervention seemed acceptable to staff if the resident was not distressed. When staff were presented with scenario-based questions around capacity they were more successful than when asked direct questions relating to the Mental Capacity Act. Scenario-based training may be helpful to reinforce familiarity and facility with the principles of the Mental Capacity Act. (shrink)

In this discussion paper we consider the influence of ethnicity, religiosity, spirituality and health literacy on Advance Care Planning for older people. Older people from cultural and ethnic minorities have low access to palliative or end-of-life care and there is poor uptake of advance care planning by this group across a number of countries where advance care planning is promoted. For many, religiosity, spirituality and health literacy are significant factors that influence how they make end-of-life decisions. (...) Health literacy issues have been identified as one of the main reasons for a communication gaps between physicians and their patients in discussing end-of-life care, where poor health literacy, particularly specific difficulty with written and oral communication often limits their understanding of clinical terms such as diagnoses and prognoses. This then contributes to health inequalities given it impacts on their ability to use their moral agency to make appropriate decisions about end-of-life care and complete their Advance Care Plans. Currently, strategies to promote advance care planning seem to overlook engagement with religious communities. Consequently, policy makers, nurses, medical professions, social workers and even educators continue to shape advance care planning programmes within the context of a medical model. The ethical principle of justice is a useful approach to responding to inequities and to promote older peoples’ ability to enact moral agency in making such decisions. (shrink)

Societies vary in their levels of social inequality and in the degree of popular support for policies that reduce disparities within them. Survey research in Texas, where levels of disparity in health and medical care are relatively high, studied how psychological mechanisms of moral disengagement relate to public support for expanding access to government-subsidized health care. Telephone interviews ( N = 1,063) measured agreement with statements expressing tendencies to minimize the effects of inequality, blame its victims and morally (...) justify limits on government help. The interviews also assessed support for general and specific policies to reduce inequality, e.g., through state-subsidized health care for lower income groups, as well as political party affiliation, ideological orientation, gender, age, education and income. Agreement with beliefs expressing moral disengagement was associated with opposition to governmental policies to reduce inequality in children’s health care. Beliefs that justify the withholding of government assistance, blame the victims of societal inequality, and minimize perceptions of their suffering were strongly related to variation between and within groups in support for governmental action to reduce inequality. (shrink)

This article introduces Designing for Care (D4C), a distinctive approach to project management and technological design informed by Care Ethics. We propose to conceptualize “care” as both the foundational value of D4C and as its guiding mid-level principle. As a value, care provides moral grounding. As a principle, it equips D4C with moral guidance to enact a caring process. The latter is made of a set of concrete, and often recursive, caring practices. One of the key (...) assumption of D4C is a relational ontology of individual and group identities, which fosters the actualization of caring practices as essentially relational and (often) reciprocal. Moreover, D4C adopts the “ecological turn” in CE and stresses the ecological situatedness and impact of concrete projects, envisioning an extension of caring from intra-species to inter-species relations. We argue that care and caring can influence directly some of the phases and practices within the management of (energy) projects and the design of sociotechnical (energy) artefacts and systems. When issues related to “value change” emerge as problematic (e.g., values trade-offs, conflicts), the mid-level guiding principle of care helps evaluate and prioritize different values at stake within specific projects. Although there may be several actors and stakeholders involved in project management and technological design, here we will focus on the professionals in charge of imagining, designing, and carrying out these processes (i.e., project managers, designers, engineers). We suggest that adopting D4C would improve their ability to capture and assess stakeholders’ values, critically reflect on and evaluate their own values, and judge which values prioritize. Although D4C may be adaptable to different fields and design contexts, we recommend its use especially within small and medium-scale (energy) projects. To show the benefits of adopting it, we envisage the application of D4C within the project management and the technological design of a community battery. The adoption of D4C can have multiple positive effects: transforming the mentality and practice of managing a project and designing technologies; enhancing caring relationships between managers, designers, and users as well as among users; achieving better communication, more inclusive participation, and more just decision-making. This is an initial attempt to articulate the structure and the procedural character of D4C. The application of D4C in a concrete project is needed to assess its actual impact, benefits, and limitations. (shrink)

In this book, an international group of philosophers, economists and theologians focus on the relationship between justice, luck and responsibility in health care. Together, they offer a thorough reflection on questions such as: How should we understand justice in health care? Why are health care interests so important that they deserve special protection? How should we value health? What are its functions and do these make it different from other goods? Furthermore, how much equality should there be? (...) Which inequalities in health and health care are unfair and which are simply unfortunate? Which matters of health care belong to the domain of justice, and which to the domain of charity? And to what extent should we allow personal responsibility to play a role in allocating health care services and resources, or in distributing the costs? With this book, the editors meet a double objective. First, they provide a comprehensive philosophical framework for understanding the concepts of justice, luck and responsibility in contemporary health care; and secondly, they explore whether these concepts have practical force to guide normative discussions in specific contexts of health care such as prevention of infectious diseases or in matters of reproductive technology. Particular and extensive attention is paid to issues regarding end-of-life care. (shrink)

Shared decision-making is a well-recognized model to guide decision-making in medical care. However, the shared decision-making concept can become exceedingly complex in adolescent patients with varying degrees of autonomy who have most of their medical decisions made by their parents or legal guardians. The complexity increases further in ethically difficult situations such as terminal illness. In contrast to the typical patient-physician dyad, shared decision-making in adolescents requires a decision-making triad that also includes the parents or guardians. The multifactorial nature (...) of these cases can overwhelm treatment teams, with minimal guidance on how to best approach the patient–parents–physician dynamic in an ethically appropriate manner. Estimated time left to live is the paramount ethical consideration for such cases with respect to shared decision-making. This paper offers a sliding scale to serve as a grounding reference for clinicians who care for terminally ill adolescents and hospital ethics committee members for initiating and guiding the ethical discussion for these patients. This paper also elucidates several other ethically salient features inherent to many of these cases, including quality of life, treatability of disease, cultural influences, among others. Yet how each of these variables is weighed is dependent upon the specific circumstances of each individual case. Ultimately, shared decision-making in adolescent patients with terminal illnesses must be a collaborative and ongoing process that thoughtfully weighs the values and ethical responsibilities of the patient, parents, and physician to ideally reconcile differences and come to a consensus on the best management option for each individual patient. (shrink)

In spite of an intensive discussion of ethical subjects, psychiatric departments rarely request clinical ethics support. However, during regular psychological supervisions subjects with an underlying ethical conflict are increasingly encountered. Based on the case study of a 39-year-old female patient suffering from personality disorder and her newborn child, the role of ethical consultation in psychiatric treatment and the decision making regarding health and welfare of child and mother will be presented. While discussing opportunities and limitations of psychological supervision as a (...) possible vehicle for clinical ethics support, it becomes obvious that during psychological supervision, ethical conflicts can also be reflected and treatment alternatives be evaluated. Psychological supervision finds its limits because of its more intuitive processes when the conflict escalates, when the patient cannot be involved and when institutional interests dominate. In these cases, the more structured and formalised process of clinical ethics consultation clearly offers advantages. (shrink)

While most of the mortality associated with severe acute respiratory syndrome coronavirus 2 has been in elderly populations and adults with significant medical comorbidities, there has been death and morbidity in paediatric populations. As vaccine trial data is released to the public, many people look to the future with hope ; with good vaccine uptake there is the opportunity to reduce the spread of infectious pandemics. Initial vaccine trials were completed with adults and were expanded to include paediatric populations delaying (...) paediatric COVID-19 vaccine initiatives. The exclusion of children from initial vaccine trials during a pandemic is not morally justifiable and fosters distrust with the pharmaceutical and medical industries and inevitably postpones vaccinating children when there is a surplus of available vaccines. The delayed vaccination of children under twelve may have significant public health and economic consequences as there may be ongoing viral transmission in the context of reopening strategies. The safety and efficacy of these candidate vaccines in children should be assessed expeditiously so that distribution to vulnerable paediatric populations is not impacted. Vaccine uptake compliance in the general population is important in establishing herd immunity and ensuring that there is thorough scientific evidence to support vaccination for children is important in establishing community trust. (shrink)

At the height of the COVID-19 crisis in the Netherlands a shortness of intensive care beds was looming. Dutch professional medical organizations asked a group of ethicists for assistance in drafting guidelines and criteria for selection of patients for intensive care treatment in case of absolute scarcity, when medical selection criteria would no longer suffice. This article describes the Dutch context, the process of drafting the advice and reflects on the role of ethicists and lessons learned. We argue (...) that timely interaction between clinical and ethical expertise is necessary since the distinction between medical and non-medical considerations is not as clearcut as sometimes assumed. Furthermore, pragmatic considerations related to the specifics of an epidemic are of importance, for example, in relation to prioritizing health care workers. As a consequence, any protocol already present before the pandemic would need alterations to fit the current situation. The ‘fair innings’ criterion we proposed, rephrased as an argument of intergenerational solidarity, was considered reasonable by professionals as well as patient organizations. While it is desirable to draft ethical guidelines in ‘peacetime’ as a matter of pandemic preparedness, the pressure of an actual crisis facilitates decision-making, although it will also complicate a more democratic approach. (shrink)

Despite the diversity of ageing, society and academics often describe and label older persons as a vulnerable group. As the term vulnerability is frequently interchangeably used with frailty, dependence, or loss of autonomy, a connection between older age and deficits is promoted. Concerning this, the question arises to what extent it may be helpful to refer to older persons as vulnerable specifically in the context of health care. After analyzing different notions of vulnerability, I argue that it is illegitimate (...) to conclude that older age is related to increased vulnerability. Much more, identifying older adults as a vulnerable group is closely related to ageism and can be associated with paternalistic benevolence and a tendency to overprotection, especially within health care. Additionally, even though older adults are more often in situations of increased vulnerability due to their potentially higher need for health care, I argue further that older adults mainly become a vulnerable group due to ageism. In this way, it can be concluded that the vulnerability of older adults does not originate in certain attributes of the group, but arises from a characteristic of society and, in turn, health personnel, namely ageism. Labeling older adults as vulnerable therefore is only helpful, when it is used to raise awareness of the widespread ageism in society, in this context, especially in the setting of health care, and the negative consequences thereof for older adults. (shrink)

Among the options of government for reducing negative environmental externalities from agriculture is the institution of a polluter statutory liability. An environmental duty of care imposes a statutory liability on agents who interact with the environment to avoid causing environmental harm. This paper documents environmental duty of care provisions governing landholders in Queensland, Australia, with specific reference to the 2007 Queensland State Rural Leasehold Land Strategy. The paper reports on a positive response by a group of leaseholders (...) within the Northern Gulf Region in Queensland who developed a prototype environmental code of practice for grazing—a land use not previously covered by such an institution in Australia. The paper concludes that (1) a statutory environmental duty of care and specific forms of leasehold tenure are elements of an effective strategy for implementing an agricultural environmental ethics in north Australia’s rangelands and (2) a grazing industry code of practice is a practical and important tool for the grazing industry to safeguard its social licence to operate. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reifying Relevance in Mild Cognitive Impairment:An Appeal for Care and CautionJanice E. Graham (bio) and Karen Ritchie (bio)KeywordsAlzheimer’s disease, construction, dementia, market forces, mild cognitive impairmentWe thank the reviewers for their thoughtful comments that probe shadowy areas in our argument, and we welcome this opportunity to elucidate our position. First, we are not repudiating the natural and social facts of pathologic brain degeneration and the physical and cognitive (...) impairments that manifest in people affected by dementia disorders. We are, however, questioning the epistemology, politics, and persistence by some to harden the construct of mild cognitive impairment (MCI) prematurely as a "natural" precursor to dementia. We suggested insufficiencies in viewing MCI as prodromal to Alzheimer's disease (AD; Graham and Ritchie 2006, 36), and pointed to evidence for the prognostic irrelevance of some MCI subcategories (35). The commentators have read our manuscript as suggesting that AD and MCI are different kinds, and that a diagnosis of AD is more "real" than that of MCI. But AD is also fraught with classification issues, as we describe in the section of our paper that deals with consensus committees, published practice guidelines, and the determination of treatment efficacy. Like MCI, AD is a heterogeneous condition, but unlike MCI, AD is a constructed practical kind that does some "work" beyond essentialist (neural degeneration, brain atrophy) claims. Its criteria identify people with well-defined dementia symptoms and multiple cognitive and functional impairments who are in need of, and benefit from, support. Even with these criteria, however, there have been great attempts to achieve definitional accuracy in dementia diagnoses. Practical refinements to the differential diagnosis of dementia based on solid research evidence have made way for more specific recognitions of vascular dementias, dementia of the Lewy body type, and other subtypes beyond AD. So AD too has been subject to more careful, more cautious operationalization in recent years, with research supporting multiple factors and the comorbidity of several types (kinds) of dementia in any one individual.Our paper takes up concerns that are not resolved for dementia and suggests that the nascent category of MCI is still so insufficiently defined as to be ambiguous, and as such, is in danger of identifying individuals with what will be, and has [End Page 57] already been, linked to a debilitating and deeply stigmatizing and fatal disorder (AD). We are not contesting the reality that some people begin to display early signs of cognitive loss, nor are we suggesting that symptoms be ignored; as researchers, we stand behind the careful tracking of symptoms and signs in patients and research participants as an essential clinical and research practice. In a era where the public has been made wary of the potentially fatal effects of new treatments whose more careful scrutiny in specific populations would have saved lives (e.g., Fontanarosa, Rennie, and DeAngelis 2004; Psaty and Furberg 2005), and made all the more popular by what Kramer coined "diagnostic bracket creep" (1993, 15), we are questioning the drivers and value of a premature diagnostic classification whose definitional accuracy is neither sufficient nor effective for specific identification of individuals.That matters of fact are constructed does not take away from their natural fact. Some people have subjective reports or show objective evidence of cognitive decline while having preserved activities of daily living—the construction of this evidence indicates they are not normal and they are not demented. Based on such evidence, where then does the balance of probability for MCI lie? A multidisciplinary international group of experts gathered in Stockholm in 2003 to discuss MCI concepts (Winblad et al. 2004). They acknowledged that the heterogeneous etiology of MCI contributes to "some confusion concerning the specific boundaries of the condition", stating that this "not normal, not demented" condition is nonetheless "useful both clinically and as a research entity" (p. 241). Importantly, they concluded that MCI needs "better definition" (p. 246). It was at this stage that we first wrote our manuscript, and in the subsequent two years we have eagerly awaited new studies, and the recognition of flexible, practical subtypes to evolve.We state "that MCI cannot be considered to be a separate clinical entity" (Graham and... (shrink)

The World Health Organisation (WHO) is leading a global effort to deliver improved diagnostic testing to people living in low‐resource settings. A reliance on the healthcare technologies marketplace and industry, shapes many aspects of the WHO project, and in this situation normative guidance comes by way of the ASSURED criteria — Affordable, Sensitive, Specific, User‐friendly, Rapid and robust, Equipment‐free, and Delivered. While generally improving access to diagnostics, I argue that the ASSURED approach to distributive justice — efficiency — and (...) assessment of worth — productivity — may constrain efforts to deliver timely and accurate diagnosis in the developing world equitably by holding back new and innovative diagnostics and indirectly encouraging program and device design that may unfairly discriminate against certain groups. Even as we try to overcome the problem of global healthcare injustice, we may be entrenching disadvantage. I present my critique of ASSURED by 1) referencing Boltanski and Thévenot's theory of orders of worth to highlight the industrial and market foundations of the ASSURED guidelines; 2) comparing ASSURED with other normative guides that elevate the importance of civic responsibility in evaluations of distributive justice; 3) presenting a case study of the failed promise of microfluidic diagnostic devices. I conclude that a new approach to normative guidance is required to assess the value of developing world diagnostics, preferably, one that does not force global public goods into the marketplace. (shrink)

The COVID-19 pandemic has impacted medical care in many ways; previously, a patient would enter a hospital and had an approximate idea of what would happen upon his admission, the physician informed them about it, but in the last two years this scenario has changed. Therefore, our aim was to identify if bioethical principles are present in the physician–patient relationship and the effect of these in the health care provided, through an observational and descriptive study where patients answered (...) the validated ReMePaB questionnaire that measures the presence of bioethical principles in the physician–patient relationship, on the seventh day of their hospital stay and 24 h after discharge, during the period from 1 August to 5 November 2020. In autonomy, an improvement in the score was observed in the second application compared to the first measurement; in the principle of non-vulnerability, the same scenario was observed for the first and second measurements, respectively. In the principles of beneficence, dignity, and justice, no statistically significant differences were observed. Considering the presence or absence of bioethical aspects in health care in this pandemic creates an area of opportunity to know the feelings of the patient during the care received and to maintain what is done well and improve those aspects that can be improved. (shrink)

We developed this study to examine the issue of parental refusal of treatment, looking at the issue through a cultural competence lens. Recent cases in Canada where courts have declined applications by clinicians for court orders to overrule parental refusal of treatment highlight the dispute in this area. This study analyses the 16 cases of a larger group of 24 cases that were selected by a literature review where cultural or religious beliefs or ethnic identity was described as important reasons (...) behind the refusal. The most significant finding was that nearly all of the cases cited unacceptable side effects as the main reason for declining treatment. We then analysed the detail of the cases and concluded that in the first instance a skilled clinical approach to develop an agreed management plan is by far the best approach. In the event that agreement cannot be reached we recommend engaging a mediator to help the clinician and parents/child to find an agreeable way forward. We argue that the option of se... (shrink)

Background On December 2017 the Italian Parliament approved law n. 219/2017 “Provisions for informed consent and advance directives” regarding challenging legal and bioethical issues related to healthcare decisions and end-of life choices. The law promotes the person’s autonomy as a right and provides for the centrality of the individual in every scenario of health care by mean of three tools: informed consent, shared care planning and advance directives. Few years after the approval of the law, we conducted a (...) survey among physicians working in four health care facilities specific for the care of people suffering from psychiatric disorders, cognitive disorders and dementia located in the North of Italy aiming to investigate their perceived knowledge and training need, attitudes regarding law n. 219/2017 provisions, and practices of implementation of the law. Methods A semi-structured questionnaire was developed on an online platform. The invitation to participate in the survey was sent by email to the potential participants. Information was collected by means of the online platform (Google Forms) which allows to export data in a spreadsheet (Windows Excel) to perform basic statistical analysis (frequency distributions, bar chart representation). Results Twenty-five out of sixty physicians participated in the survey. None of the respondents value their knowledge of the law as very good, 10 good, 13 neither poor nor good, 1 poor and 1 very poor. All the respondents want to learn more about the law (21 yes and 4 absolutely yes). The majority of respondents agrees with the content of the law as a whole (3 absolutely agree, 13 agree), and on each provision. The question on the clarity of the concept of capacity in the law received mixed answers and this impacted on the physicians’ opinion regarding the legitimacy in principle for our groups of patients to realize shared care planning and write advance directives. Thirteen physicians neither introduced the theme of shared care planning nor arranged for shared care planning and the main reason for this was that no patient was in a clinical situation to require it. When shared care planning is realized, a variability in terms of type and number of meetings, mode of tracking and communication is registered. Conclusions Our survey results indicate a need for more clarity regarding the interpretation and implementation of the law in the patient groups under study. There are in particular two related areas that deserve further discussion: (1) the question of whether these patient groups are in principle legitimized by the law to realize shared care planning or write advance directives; (2) the notion of capacity required by the law and how this notion can be declined in real-life situations. (shrink)

The purpose of this text is to tell the story of the implementation of the _Act Respecting End-of-Life Care,_ referred to hereafter as _Law 2_ (Gouvernement du Québec, 2014) with an emphasis on the ambiguous role of ethics in the Interdisciplinary Support Groups (ISGs), created by Quebec's _Ministère de la santé et des services sociaux_ (MSSS). As established, ISGs provide “clinical, administrative and ethical support to health care professionals responding to a request for Medical aid in dying (...) (MAiD)” (Gouvernement du Québec, 2015). It is suggested that their composition includes the participation of a person with an expertise in ethics. These ISGs represent an important innovation for stakeholders involved in MAiD. To date, no scientific research has specifically addressed ISGs and little research has been conducted in other jurisdictions on the roles, operations and practices of MAiD support structures, especially the implication of ethics. Several ISGs have certainly developed promising practices that could benefit all stakeholders in the wider field of ethics and end of life. We will explore the development of ISGs in Quebec as a support structure for MAiD by highlighting the role that ethics has played (and should play) in these morally and humanly challenging situations. (shrink)

This case study examines the circumstance of a patient who has clearly articulated non-treatment preferences and who then later becomes incapacitated. The patient's wife as well as a consulting physician both expressed a preference for full treatment at the time of this incapacity. The analysis of this circumstance is pertinent given misinformed beliefs by health care providers that once a patient is incapacitated, the family is free to override prior values and preferences. The analysis discusses the autonomy, beneficence, and (...) virtue-based considerations as to why a formerly capacitated patient who has not recanted his non-treatment preferences should be obeyed. (shrink)

Elderly people are a particularly vulnerable group in society and have special health problems. The world population of older people is increasing. People who are 65 years or older constitute 6% of the Turkish population, 90% of whom have chronic health problems. In Turkey, there is a high possibility that elderly people’s requirements are not met by today’s health care system in the way they would wish. They prefer not to be hospitalized when they have health problems. From a (...) wider perspective, various countries are still seeking how to provide the best care for elderly people. Our goal was to characterize home-based care for elderly people using an ethical approach as an area of interest for nurses and other health care professionals now and in the future, both for Turkey specifically and from a global perspective. We studied four case histories and then prepared a composite scenario and a short questionnaire for elderly people living in a specific district of Istanbul to evaluate their expectations from the health care system. We compared our findings with situations in other countries and have proposed some practical solutions. The results showed that these older people preferred to receive nursing care at home instead of in hospital in Turkey, and also in many other countries. In this article we discuss our findings, comparing them with those in the literature, and suggest that there should be nursing care at home with insurance coverage while using a proper ethical approach. (shrink)

There is a gap in the clinical bioethics literature concerning the approach to assessment of medical decision-making capacity of adolescents or young adults who demonstrate diminished maturity due to longstanding reliance on caregiver support, despite having reached the age of majority. This paper attempts to address this question via the examination of a particular case involving assessment of the decision-making capacity of a young adult pregnant patient who also had a physically disabling neurological condition. Drawing on concepts from adolescent bioethics (...) and feminist critiques of bioethical theory, we argue that limited life experience, secondary to a disabling neurological condition, can result in a lack of adult-like capacity even in a patient who is legally an adult. In such cases, it may be that autonomy, to the extent that it is to be relevant and meaningful, must be viewed through a relational lens. Furthermore, clinicians may avoid unjustifiably paternalistic practices by working with the patient help her gain a better appreciation of the consequences of her decision, thereby calling forward her capacity rather than resorting to being directive in counseling. We conclude that lessons from this case can be used to approach ethically complex instances of medical decision-making in adult patients with normal cognition but diminished experiential maturity. (shrink)

Societal aging raises challenging ethical questions regarding the just distribution of health care between young and old. This article considers a proposal for age-based rationing of health care, which is based on the prudential life span account of justice between age groups. While important objections have been raised against the prudential life span account, it continues to dominate scholarly debates. This article introduces a new objection, one that develops out of the well-established disability critique of social contract (...) theories. I show the implications of this critique for the prudential life span account and for the special case of age-group justice. The result is that age-based rationing based on the prudential life span approach is not supported, and that the prudential life span approach itself is not the best way to think about allocating health care between age groups. I propose an alternative approach that avoids the disability objection, and consider its implications for specific proposals for age-based rationing of health care. (shrink)

PurposeContinuous patient-reported outcomes to identify and address patients’ needs represent an important addition to current routine care. The aim of this study was to identify and determine important dimensions of health-related quality of life in routine oncological care.MethodsIn a cross-sectional qualitative study, interviews and focus groups were carried out and recorded. The interviewees were asked for their evaluation on HrQoL in general and specifically regarding cancer treatment. The material was transcribed and analyzed using qualitative content analysis based (...) on Mayring. The results were reviewed in an expert discussion.ResultsInterviews with patients and clinicians, as well as five focus groups with clinicians were conducted. Initially, nine deductive and two inductive categories on HrQoL were built. Four categories were excluded following the qualitative content analysis because they were hardly or not at all mentioned by participants. Following on from the analysis of the expert discussion, one dimension was added, and two further categories were excluded. The resulting system consisted of six dimensions: emotional health, physical ailments, autonomy, social functionality, dignity, and resources.ConclusionThe identified dimensions of HrQoL in routine oncological care were found to differ from those used in existing HrQoL measurements for patients. Further research is needed to test and evaluate the presented structure in a larger sample of cancer patients to further assess its psychometric properties. (shrink)

The author comments on the Consensus Statement from the point of view of an ethics consultant in Germany. Since many hospitals in Germany are under considerable competitive pressure, mission statements are becoming more and more important in order to draw a distinction between the different hospital types and to convey the meaning of the corporate identity both internally and externally. The Consensus Statement, which provides basic orientation without going into too much detail, can be a helpful initial document. However, it (...) does not deal with two specific problem areas which are examined more closely in the commentary: the application of risk-of-death algorithms in ICUs and the question of church membership of the caregivers to enable a proper preparation for death. The commentary also reveals certain differences in the discussions taking place in Anglo-Saxon countries and Continental Europe. (shrink)

Restrictive visitation policies produce inequities in healthcare that have meaningful consequences for patients’ health and well-being. There is a surplus of existing literature exploring the consequences of reduced visitation in the setting of pediatric patients lacking decision-making capacity, but relatively little scholarship addressing visitation restriction for less vulnerable adults possessing capacity. Here, we present the case of a patient who suffered serious complications of childbirth, during the delivery of her healthy newborn, leading to prolonged hospitalization. During her treatment course, she (...) was subsequently denied visitation with her newborn, who had been discharged from the hospital, and this had detrimental effects on her recovery. Hospital policies restricting visitation during the COVID-19 pandemic were intended to reduce the risk of disease exposure for both patients and staff, despite conflicting evidence demonstrating this benefit. In contrast, they often have negative effects on patient stress, mood, and physical recovery. The sequelae of this US-based case study argue the need for more holistic hospital visitation policies, placing a specific lens on adult patients receiving a visitation from their newborn children. (shrink)

A critical opportunity for identifying children experiencing domestic minor sex trafficking exists in healthcare settings. This quantitative study documented the disconnect between youth seeking help and interventions offered by healthcare providers. Ninety-one sex youth exploited through sex trafficking answered questions detailing their experiences of seeking medical treatment for injuries associated with selling or trading sex. Healthcare providers who were aware that injuries were sustained due to sex trafficking did not always alert legal or mandated reporting authorities. This analysis identified violations (...) of the four pillars of ethical healthcare. This investigation revealed lost opportunities to intervene on behalf of youth suffering trauma and abuse from sex trafficking highlighting the necessity for a formal protocol in healthcare settings to effectively intervene. (shrink)

Designing and manufacturing medical devices for specific patients is becoming increasingly feasible with developments in 3D printing and 3D imaging software. This raises the question of how patient-specific devices can be evaluated, since our ‘gold standard’ method for evaluation, the randomised controlled trial, requires that an intervention is standardised across a number of individuals in an experimental group. I distinguish several senses of patient-specific device, and focus the discussion on understanding the problem of variations between instances of (...) an intervention for RCT evaluation. I argue that, despite initial appearances, it is theoretically possible to use RCTs to evaluate some patient-specific medical devices. However, the argument reveals significant difficulties for ensuring the validity of such trials, with implications for how we should think about methods of evidence gathering and regulatory approaches for these technologies. (shrink)

We concur with Baum and colleagues (2009) on the importance of pandemic planners taking explicit steps to employ public engagement methodologies. Thus far, as Baum and colleagues note, there have b...

When a group does harm, sometimes there’s no obvious individual who bears moral responsibility, and yet we still intuit that someone is to blame. This apparent ‘deficit’ of moral responsibility has led some scholars to posit that groups themselves can be responsible, and that this responsibility is distributed in some uniform fashion among group members. This solution to the deficit, however, risks providing a scapegoat for individuals who have acted wrongly and shifting blame onto those who have not. Instead, (...) this article argues that, in most deficit cases, moral responsibility is borne not by the group but by specific individual members. When an individual acts within a group, she gains an increased potential for doing harm – and, accordingly, heightened duties of care toward others. These duties can, depending on the individual’s position, require amending the group’s rules, procedures, and norms. In most deficit cases, it is individuals who have failed to fulfill these duties who are responsible. (shrink)

Background Nurses providing care to patients with end-of-life or terminal illnesses often encounter ethically challenging situations leading to moral distress. However, existing quantitative studies have examined moral distress using instruments that address general clinical situations rather than those specific to end-of-life care. Furthermore, qualitative studies have often been limited to participants from a single unit or those experiencing moral distress-induced circumstances. A comprehensive and integrated understanding of the overarching process of moral distress is vital to discern the (...) unique circumstances surrounding end-of-life care and its consequential impacts. Research objectives To explore the moral distress experiences of nurses who are frequently involved in caring for patients with end-of-life or terminal illnesses and apply it to two existing theories: the model of moral distress and the ecological model. Research design A qualitative descriptive approach was employed. Participants and research context Seven focus group interviews involving 30 nurses were performed. The subsequent transcriptions underwent rigorous content analysis. Ethical considerations We obtained Institutional Review Board approval from a university. Focus group interviews were conducted with nurses who agreed to participate and signed the consent form. Findings The moral distress-inducing factors and nurses’ perceived impact of moral distress were identified and categorized based on moral distress theories and ecological models. A total of 15 categories and 30 subcategories across the following 4 domains were derived: (1) intrapersonal, (2) interpersonal, (3) organizational, and (4) structural factors. Conclusions End-of-life-specific circumstances induced moral distress among nurses, with both negative and positive impacts identified. Effective organizational and policy support is essential to manage conflicts, form a healthy organizational culture, provide training, and prevent unnecessary expenses due to the negative consequences of moral distress. (shrink)

Congenital deafness is one of the most common birth defects reported. Approximately 70% of congenital deafness is non-syndromic, and approximately 80% of non-syndromic hearing loss results from a genetic cause. Middleton et al.’s1998 study highlighted the negative attitudes of culturally Deaf individuals towards genetic testing for genes known to cause hearing loss. While studies concerning genetic testing for deafness genes reference Middleton’s study, to our knowledge a re-evaluation of the attitudes of Deaf individuals towards genetic testing has not been conducted (...) recently. The purpose of this study is to re-establish attitudes of Deaf individuals towards genetic testing of genes known to cause hearing loss. A computer-based questionnaire was distributed to members of the Deaf community. Responses of participants were recorded and analyzed. The primary investigator then attended Deaf community events and the 2015 Alabama Association of the Deaf Conference, and recruited individuals interested in participating in the study. The surveys were distributed to these individuals and their anonymous responses were analyzed. Our results show there are more positive attitudes within the Deaf community towards genetic counseling, genetic testing, and prenatal testing of genes known to cause hearing loss than were previously documented, although negative attitudes are still present. Additionally, our study shows there is a desire among members of the Deaf community to learn more about and potentially receive these services, despite the fact they are rarely offered by healthcare providers. (shrink)

Black girls regularly experience gendered, racial structural violence, not just from formal systems of law enforcement, but throughout their daily lives. School is one of the most central and potentially damaging sites for Black girls in this regard. In this paper, I draw attention to the role of the beauty salon as a space of renewal for Black women and girls as they navigate systems of oppression in their daily lives and report on the ways in which a specific (...) beauty salon in Chesterfield County, Virginia, supported a group of Black high school girls. The study focuses on the exposure of Black girls to carceral measures in school settings and speaks to the role of African-American beauty salons as spaces where collective care from violence can manifest and strategies to interrupt racialized gendered violence against Black girls can emerge. As Co-Investigator of this study funded by the Department of Justice, I created the “scholar-artist-activist lab,” consisting of a small group of undergraduate and graduate students facilitating workshops with a mixed gender group of Black high-school students, to discuss, interact, and participate in social justice-centered exercises. I focus here on the experiences of the Black girls who participated in the study. (shrink)

Focusing on one of the most studied dimensions of Social Psychology, i.e., intergroup relations, this study analyzes its discursive accomplishment in a specific group-based intervention, i.e., the talk and work of an Italian group home, i.e., a small alternative care facility hosting a group of out-of-home children. Particularly, we focused on the fictionally called “Nuns’ Home,” a group home previously investigated for its ethnocentric bias, and its intergroup relations with “inside” and “outside” groups, such as schools, biological (...) families, and social services. By combining a qualitative and quantitative approach in analyzing one audio-recorded ethnographic interview with the whole team of professionals, we aimed at accounting for the multitude of internal and external stakeholders that participants refer to, analyzing the discursive accomplishment of ingroup and outgroup in talk-in-interaction and investigating ingroup bias and group qualification. To do so, we detected social categorization markers and qualifying devices that participants rely on when referring to groups. Results show that, among the numerous groups recognized, participants co-construct intergroup relations and ingroup bias implying negative assessment over external groups. Being different from traditional laboratory studies illustrating substantial contraposition between ingroup and outgroup, our qualitative analysis reveals the multitude of groups by which the ingroup is formed and their internal fragmentation. To conclude, we discussed the implications of qualitatively studying intergroup relations in group homes and indicated future lines of research. (shrink)

Environmental ethics has to deal with the challenge of reconciling contrasting ecocentric and animal-centric perspectives. Two classic attempts at this reconciliation, which both adopted the metaphor of concentric circles, are discussed. It is concluded that the relationship between the animal and its environment, whether the latter is human or natural, should be a pivotal element of such reconciliation. An alternative approach is presented, inspired by care ethics, which proposes that caring for wild animals implies caring for their relationship to (...) the natural environment and thus taking action to maintain wildlife habitat. This type of care is labelled non-specific care because it is not directed towards the individual wild animal and its specific individual needs. In contrast, caring for domestic animals is called specific care because it is much more directed towards the individual animal's needs. (shrink)

The popularity and availability of global health experiences has increased, with organizations helping groups plan service trips and companies specializing in “voluntourism,” health care professionals volunteering their services through different organizations, and medical students participating in global health electives. Much has been written about global health experiences in resource poor settings, but the literature focuses primarily on the work of health care professionals and medical students. This paper focuses on undergraduate student involvement in short term medical volunteer (...) work in resource poor countries, a practice that has become popular among pre-health professions students. We argue that the participation of undergraduate students in global health experiences raises many of the ethical concerns associated with voluntourism and global health experiences for medical students. Some of these may be exacerbated by or emerge in unique ways when undergraduates volunteer. Guidelines and curricula for medical student engagement in global health experiences have been developed. Guidelines specific to undergraduate involvement in such trips and pre-departure curricula to prepare students should be developed and such training should be required of volunteers. We propose a framework for such guidelines and curricula, argue that universities should be the primary point of delivery even when universities are not organizing the trips, and recommend that curricula should be developed in light of additional data. (shrink)

Changes in technological and economic aspects of society have impacted on how we understand professional and client relationships. These relationships are constructed in terms of patients/users requiring care, and customers whose complaints have become a yardstick of satisfaction. A consequence of these changes is an interest in the related concepts of emotional labour and emotion work. For nurses, caring for people in illness and in health is central to their work, and it is this aspect of emotion at work (...) that distinguishes nursing from other occupational groups. This paper is concerned with emotion work in a National Health Service Direct (NHS Direct) call centre in the United Kingdom. Drawing upon theoretical perspectives from organizational psychology and sociology it focuses upon the social processes that narrate emotion events in a specific context. It is based on a qualitative study exploring the experience and emotion work of nurses working in a call centre. Issues in caring without the face‐to‐face contact using communication technology were crucial to the way nurses perceived their work. These factors contributed to nurses’ orientation to work and to the way that conflict and dissonance with expectations of callers and managers impacted on nurses’ emotion work. (shrink)

The current Ebola virus epidemic in Western Africa appears to be spiraling out of control. The worst-case projections suggested that the unchecked spread could result in almost 1.4 million cases by the end of January 2015 with a case fatality rate of at least 50%. The United States and European nations have begun to respond in earnest with promises of supplies, isolation beds, and trained health care personnel in an effort to contain the epidemic and care for the (...) sick. However, there is neither a vaccine nor specific treatment for Ebola infection, and therapy is ideally centered on supportive care. I have previously argued that the provision of palliative care is obligatory during an overwhelming health catastrophe, notably pandemic influenza. Since affected Ebola patients have best outcomes with technologically advanced intensive care—resources in scarce supply in the area—I suggest that the only acceptable approach to large numbers of very sick, dying, and suffering Ebola patients who overwhelm the reso.. (shrink)

For the contemporary reader of Psychoanalysis: Its Image and Its Public the analyses of communicative systems in the book provides a challenging occasion for reconsidering current social psychological thinking about the character of social groups. In Moscovici's careful delineation of the communicative systems of diffusion, propagation and propaganda through his content analysis of the French press, one can also see the description of different types of group structured through distinctive social psychological organisations. Moscovici himself suggests that the genres of (...) diffusion, propagation and propaganda are each linked to the construction of a specific type of social-psychological object, opinion, attitude and stereotype respectively. But one can also identify different forms of affiliation corresponding to each communicative genre, and consequently also different representations of the people who constitute both the in-group and the out-group in each instance. The affiliative bonds might be described as forms of sympathy, communion and solidarity. (shrink)

Environmental ethics has to deal with the challenge of reconciling contrasting ecocentric and animal-centric perspectives. Two classic attempts at this reconciliation, which both adopted the metaphor of concentric circles, are discussed. It is concluded that the relationship between the animal and its environment, whether the latter is human or natural, should be a pivotal element of such reconciliation. An alternative approach is presented, inspired by care ethics, which proposes that caring for wild animals implies caring for their relationship to (...) the natural environment and thus taking action to maintain wildlife habitat. This type of care is labelled non-specific care because it is not directed towards the individual wild animal and its specific individual needs. In contrast, caring for domestic animals is called specific care because it is much more directed towards the individual animal's needs. (shrink)

BackgroundHIV prevention research in resource-limited countries is associated with a variety of ethical dilemmas. Key amongst these is the question of what constitutes an appropriate standard of health care (SoC) for participants in HIV prevention trials. This paper describes a community-focused approach to develop a locally-appropriate SoC in the context of a phase III vaginal microbicide trial in Mwanza City, northwest Tanzania.MethodsA mobile community-based sexual and reproductive health service for women working as informal food vendors or in traditional and (...) modern bars, restaurants, hotels and guesthouses has been established in 10 city wards. Wards were divided into geographical clusters and community representatives elected at cluster and ward level. A city-level Community Advisory Committee (CAC) with representatives from each ward has been established. Workshops and community meetings at ward and city-level have explored project-related concerns using tools adapted from participatory learning and action techniques e.g. chapati diagrams, pair-wise ranking. Secondary stakeholders representing local public-sector and non-governmental health and social care providers have formed a trial Stakeholders' Advisory Group (SAG), which includes two CAC representatives.ResultsKey recommendations from participatory community workshops, CAC and SAG meetings conducted in the first year of the trial relate to the quality and range of clinic services provided at study clinics as well as broader standard of care issues. Recommendations have included streamlining clinic services to reduce waiting times, expanding services to include the children and spouses of participants and providing care for common local conditions such as malaria. Participants, community representatives and stakeholders felt there was an ethical obligation to ensure effective access to antiretroviral drugs and to provide supportive community-based care for women identified as HIV positive during the trial. This obligation includes ensuring sustainable, post-trial access to these services. Post-trial access to an effective vaginal microbicide was also felt to be a moral imperative.ConclusionParticipatory methodologies enabled effective partnerships between researchers, participant representatives and community stakeholders to be developed and facilitated local dialogue and consensus on what constitutes a locally-appropriate standard of care in the context of a vaginal microbicide trial in this setting.Trial registrationCurrent Controlled Trials ISRCTN64716212. (shrink)