Cancer care has transitioned from clinical-based to home-based care to support longterm care in a more familiar and comfortable environment. This care transition has put family caregivers (FCGs) in a strategic position as care providers. Cancer care at home involves psychological and emotional treatment at some point, making FCGs deal with the stress of cancer patients frequently. Due to their limited care competencies, they need supportive care from healthcare professionals in cancer (...) stress management. This study aims to examine how types of demanded healthcare information affect the FCG’s role in reducing the stress of female cancer patients. The mindsponge theory was used in conceptual development and interpretation. Bayesian Mindsponge Framework (BMF) analytics were used for statistical analysis on a dataset of 48 spouses (husbands) and 12 other family members in five congested communities of Surabaya, Indonesia. Results showed that among the six types of healthcare information, FCGs with higher demand for cancer-specific information were more likely to need support in reducing the stress of female cancer patients. Meanwhile, FCGs with a higher demand for information about support services were less likely to need support to reduce cancer patients’ stress. Other types of healthcare information have ambiguous effects on the need for support in reducing cancer-induced stress. This study reveals that the demanded cancer-specific information, e.g., cancer prognosis or likely outcome, must be prioritized to assist FCG’s role in managing cancer stress. (shrink)

Care-supporting policies incentivise women’s withdrawal from the labour market, thereby reinforcing statistical discrimination and further undermining equality of opportunities between women and men for positions of advantage. This, I argue, is not sufficient reason against such policies. Supporting care also improves the overall condition of disadvantaged women who are care-givers; justice gives priority to the latter. Moreover, some of the most advantageous existing jobs entail excessive benefits; we should discount the value of allocating such jobs meritocratically. Further, (...) women who have a real chance to occupy positions of advantage have most likely already enjoyed more than their fair share of opportunities; they lack a claim to more. Women can have a complaint grounded in the expressive disvalue of sexist discrimination. This gives them special claims against men occupying the vast majority of top positions and against their higher share of opportunities for positions of advantage. But their claim does not speak against care-supporting policies. (shrink)

In this case, Brian, a 42-year-old patient with decision-making capacity and a history of non-adherence to treatment, refuses to leave the hospital due to concerns about a bothersome rash on his ar...

Glioblastoma is a brain tumor condition marked by rapid neurological and clinical demise, resulting in disproportionate disability for those affected. Caring for this group of patients is complex, intense, multidisciplinary in nature, and fraught with the need for expensive treatments, surveillance imaging, physician follow-up, and rehabilitative, psychological, and social support interventions. Few of these patients return to the workforce for any meaningful time frame, and because of the enormity of the financial burden that patients, their caregivers, and society face, utilization (...) reviews become the focus of ethical scrutiny. (shrink)

While primary malignant brain tumors account for only two percent of all adult cancers, these neoplasms cause a disproportionate amount of cancer-related disabilities and death. The five-year survival rates for brain tumors are the third lowest among all types of cancer. Malignant gliomas comprise the most common types of primary central nervous system tumors and have a combined incidence of five to eight cases per 100,000 people. The median survival rate of conservatively treated patients with malignant gliomas is 14 weeks; (...) with surgical resection alone, 20 weeks; with surgery and radiation, 36 weeks; and with the addition of newer biochemotherapies such as temozolomide and bevacizumab, upward of 14-18 months.The profound cost of caring for terminally ill patients with primary malignant brain tumors raises ethical considerations for the American public; the stewardship of health care dollars for the population at large maintains a juxtaposed tension against a dynamic, necessary balance of hope, care, rehabilitation and research efforts for affected patients and their advocates. (shrink)

Confusion surrounds Catholic teaching on the use of assisted nutrition and hydration, specifically the question of when, if ever, its refusal or removal is ethical. This paper focuses on two often-neglected considerations: the relationship between means and mechanism, and an assessment of proportionality of the mechanism from the patient’s perspective. The authors draw on two critical principles of Catholic moral teaching: only ordinary means are required, and proportionality is subject to the perspective of the patient, not just that of experts (...) or the culture. The mechanisms that provide food and water have distinct benefits and burdens. Their proportionality is properly subject to analysis by the patient or surrogate, who determines which mechanism is acceptable in the patient’s situation. (shrink)

Artificial intelligence (AI) systems are increasingly being used in healthcare, thanks to the high level of performance that these systems have proven to deliver. So far, clinical applications have focused on diagnosis and on prediction of outcomes. It is less clear in what way AI can or should support complex clinical decisions that crucially depend on patient preferences. In this paper, we focus on the ethical questions arising from the design, development and deployment of AI systems to support decision-making around (...) cardiopulmonary resuscitation and the determination of a patient’s Do Not Attempt to Resuscitate status (also known as code status). The COVID-19 pandemic has made us keenly aware of the difficulties physicians encounter when they have to act quickly in stressful situations without knowing what their patient would have wanted. We discuss the results of an interview study conducted with healthcare professionals in a university hospital aimed at understanding the status quo of resuscitation decision processes while exploring a potential role for AI systems in decision-making around code status. Our data suggest that (1) current practices are fraught with challenges such as insufficient knowledge regarding patient preferences, time pressure and personal bias guiding care considerations and (2) there is considerable openness among clinicians to consider the use of AI-based decision support. We suggest a model for how AI can contribute to improve decision-making around resuscitation and propose a set of ethically relevant preconditions—conceptual, methodological and procedural—that need to be considered in further development and implementation efforts. (shrink)

Background:Through the Norwegian ethics project, ethics activities have been implemented in the health and care sector in more than 200 municipalities.Objectives:To study outcomes of the ethics activities and examine which factors promote and inhibit significance and sustainability of the activities.Research design:Two online questionnaires about the municipal ethics activities.Participants and research context:A total of 137 municipal contact persons for the ethics project answered the first survey, whereas 217 ethics facilitators responded to the second survey.Ethical considerations:Based on informed consent, the study (...) was approved by the Data Protection Official of the Norwegian Social Science Data Services.Findings:Around half of the respondents found the ethics project to have been highly significant for daily professional practice. Outcomes include better handling of ethical challenges, better employee cooperation, better service quality, and better relations to patients and next of kin. Factors associated with sustainability and/or significance of the activities were sufficient support from stakeholders, sufficient available time, and ethics facilitators having sufficient knowledge and skills in ethics and access to supervision.Discussion:This study shows that ethics initiatives can be both sustainable and significant for practice. There is a need to create regional or national structures for follow-up and develop more comprehensive ethics training for ethics facilitators.Conclusion:It is both possible and potentially important to implement clinical ethics support activities in community health and care services systematically on a large scale. Future ethics initiatives in the community sector should be designed in light of documented promoting and inhibiting factors. (shrink)

Quality of care is a prominent discourse in modern health‐care and has previously been conceptualised in terms of ethics. In addition, the role of knowledge has been suggested as being particularly influential with regard to the nurse–patient–carer relationship. However, to date, no analyses have examined how knowledge (as an ethical concept) impinges on quality of care. Qualitative semi‐structured interviews were conducted with 26 patients with palliative and supportive care needs receiving district nursing care and (...) thirteen of their lay carers. Poststructural discourse analysis techniques were utilised to take an ethical perspective on the current way in which quality of care is assessed and produced in health‐care. It is argued that if quality of care is to be achieved, patients and carers need to be able to redistribute and redevelop the knowledge of their services in a collaborative way that goes beyond the current ways of working. Theoretical works and extant research are then used to produce tentative suggestions about how this may be achieved. (shrink)

Burnout is characterized by emotional exhaustion and caused by exposure to excessive and prolonged stress related to job conditions. Moreover, burnout is highly prevalent among health care professionals. The aim of this study is, first, to examine the mediating role of social support over the effect of burnout in health care professionals and, second, to explore potential gender differences. A convenience sample of 1,035 health professionals from Ecuador, including 608 physicians and 427 nurses, was surveyed using the Maslach (...) Burnout Inventory, Social Support Survey, and General Health Questionnaire as measures of burnout, social support, and general health, respectively. Social support was found to mediate the negative effects of burnout on health regardless of gender. Differences across the three dimensions of burnout and health are further discussed, along with their implications for designing effective burnout interventions for health care professionals in Ecuador. (shrink)

Background Italy was the first European country to be involved with the COVID-19 pandemic. As a result, many healthcare professionals were deployed and suddenly faced end-of-life care management and its challenges. Aims To understand the experiences of palliative care professionals deployed in supporting emergency and critical care staff during the COVID-19 first and second pandemic waves. Research design A qualitative descriptive design was adopted, and in-depth interviews were used to investigate and analyse participants’ perceptions and points of (...) view. Participants and research context Twenty-four healthcare professionals (physicians, nurses, psychologists, physiotherapists, and spiritual support) from the most affected areas of Italy were recruited via the Italian society of palliative care and researchers’ network. Ethical considerations The University Institutional Board granted ethical approval. Participants gave written informed consent and agreed to be video-recorded. Findings The overarching theme highlighted participants’ experience supporting health professionals to negotiate ethical complexity in end-of-life care. Crucial topics that emerged within themes were: training emergency department professionals on ethical dimensions of palliative and end-of-life care, preserving dying patients’ dignity and developing ethical competence in managing end-of-life care. Conclusions Our study showed palliative care teams’ challenges in supporting health professionals’ ethical awareness in emergencies. However, while they highlighted their concerns in dealing with the emergency staff’s lack of ethical perspectives, they also reported the positive impact of an ethically-informed palliative care approach. Lastly, this study illuminates how palliative care professionals’ clinical and ethical competence might have assisted a cultural change in caring for dying patients during COVID-19 and future emergencies. (shrink)

Although nurses in almost every long-term care facility face daily challenges involving issues related to residents' sexual lives, guidelines for ethically supporting sexual activity are rare and inadequate. A decision-making framework was developed to guide care providers in responding to the sexual expression of residents in long-term care. The framework recommends that nurses should weigh the documented substantial benefits of having a sexual life against harm to the resident and others, and against offence to others. This article (...) illustrates the use of this ethical decision-making framework by using the example of nurses supporting a resident's expression of his sexuality. It is suggested that nurses use this framework to guide their practice when related ethical issues arise. (shrink)

New protocols have been developed for donors after circulatory death involving early assessment of donor status and premortem supporting treatment in appropriate cases where there is evidence that the patient wished to be an organ donor. These donors are now making an increasingly marked impact on overall deceased donor numbers in the UK. Donors after brainstem death, on the other hand, are much less buoyant yet require the same flexibility in approach in order to improve rates of donation and to (...) realize the wishes of potential deceased organ donors to the proper requisite extent. (shrink)

In their strife for designing a moral system where everyone is given equal consideration, cosmopolitan theorists have merely tolerated partiality as a necessary evil (insofar it means that we give priority to our kin opposite the distant needy). As a result, the cosmopolitan ideal has long departed from our moral psychologies and our social realities. Here I put forward partial cosmopolitanism as an alternative to save that obstacle. Instead of demanding impartial universal action, it requires from us that we are (...) equally responsive in all the relationships we stand in. That goes from the local to the cosmopolitan sphere, since I defend that we are related with strangers as co-members of the global community. Thus, partiality not only is accommodated by cosmopolitanism, but actually supports it: only by having meaningful personal relationships we become able to care for distant strangers. (shrink)

Background: Due to the aging society the number of informal caregivers is growing. Most informal caregivers are women working as nurses within a health organization and they have a high risk of developing mental and physical exhaustion. Until now little research attention has been paid to the expectations and needs of double duty caregivers and the role of self-management in managing private-work balance.Objective: The overall aim of this study was to investigate the expectations and needs of double duty caregivers in (...) Netherlands, and to examine the meaning of self-management in managing work-life balance.Method: Different research methods have been applied in this exploratory study. Firstly, a scoping review has been conducted on the topics self-management and sustainable employability of double-duty caregivers using the search engines: CINAHL, MEDLINE, PubMed, and Google Scholar. Furthermore, a qualitative study has been conducted through focus groups with double duty caregivers.Results: Twenty studies that met the inclusion criteria could be identified. We found that double duty caregivers have different motivations for being a double duty caregiver based on internal and external expectations. Double duty caregiving causes a lot of mental and physical pressure for the caregiver. To be able to combine both duty’s, double duty caregivers need flexibility and understanding from the workplace. Through two focus groups we found that social support from the workplace is not enough to be able to manage the situation. Self-management skills are important to be able to communicate effectively with the workplace and community care organizations about the kind of support needed. Also, health care organizations should offer the same support to double duty caregivers as any other informal caregiver.Discussion: Double-duty caregivers are at high risk of developing symptoms of overload and risk of reduced self-management quality and employability levels across time. Health care organizations and the double duty caregiver often wait too long to act instead of taking more preventive measures. Furthermore, community care organizations should dialog with double duty caregivers about their wishes concerning the division of caring tasks. This finding calls for special attention, with long-term solutions at both macro, organizational, and employee level. (shrink)

It seems very important to us whether or not a generalization offers counter-factual support—but why? Surely what happens in other possible worlds can neither help nor hurt us? This paper explores the question whether counter-factual support does, nevertheless, have some practical value. (The question of theoretical value will be addressed but then put aside.) The following thesis is proposed: the counterfactual-supporting generalizations are those for which there exists a compact and under normal circumstances knowable basis determining the fine-grained pattern of (...) actual variation between the properties associated by the generalization (e.g., for the generalization Fs tend to be G, the exact circumstances under which any particular F is G); further, the better we understand the basis and the scope of the support offered, the greater our knowledge of fine-grained variation. We care about counterfactual support because we care about actual fine-grained variation. (shrink)

The increase of high-risk newborns due to societal changes has presented neonatal intensive care unit nurses with more ethical challenges and heightened their perception of neonatal palliative care. Therefore, this study was a descriptive survey exploring the perceptions of neonatal intensive care unit nurse regarding biomedical ethics and neonatal palliative care in neonatal intensive care units. The research participants were 97 neonatal intensive care unit nurses who had been directly involved with end-of-life care (...) for high-risk babies. Data were collected from November to December 2021 through an online survey. The Korean version of Neonatal Palliative Care Attitude Scale and the tool of biomedical ethics were used. The collected data were analyzed using the T-test, ANOVA, Scheffé test, Pearson correlation coefficient, and multiple regression analysis. The mean score for perception of biomedical ethics in neonatal intensive care unit nurses was 2.89 of 4, and that of neonatal palliative care in neonatal intensive care unit nurses was 3.10 of 5. Existence of a protocol of neonatal palliative care, the experience of patients dying, and the right to life of neonates were factors influencing the perception of neonatal palliative care. The explanatory power was 12.5%. The data support the importance of guidelines regarding systematic neonatal palliative care. Also, developing programs for sharing and supporting experiences of patients dying among colleagues and persistent education about the right to life of neonates for neonatal intensive care unit nurses can improve perception of neonatal palliative care. (shrink)

Health services internationally struggle to ensure health care is “person-centered” (or similar). In part, this is because there are many interpretations of “person-centered care” (and near synonyms), some of which seem unrealistic for some patients or situations and obscure the intrinsic value of patients’ experiences of health care delivery. The general concern behind calls for person-centered care is an ethical one: Patients should be “treated as persons.” We made novel use of insights from the capabilities approach (...) to characterize person-centered care as care that recognizes and cultivates the capabilities associated with the concept of persons. This characterization unifies key features from previous characterisations and can render person-centered care applicable to diverse patients and situations. By tying person-centered care to intrinsically valuable capability outcomes, it incorporates a requirement for responsiveness to individuals and explains why person-centered care is required independently of any contribution it may make to health gain. (shrink)

The purpose of this article is to clarify both the role of nurses in ethics meetings and the way in which ethics meetings can function as a catalyst for good nursing care. The thoughts presented are practice based; they arose from our practical experiences as nurses and ethicists with ethics meetings in health care organizations in Belgium. Our reflections are written from the perspective of the nurse in the field who is participating in (inter)professional ethical dialogue. First, the (...) difficulties that nurses experience while participating in ethics meetings are described. Then the possibilities for support of nurses in their ethical responsibility are explored. (shrink)

Clinical ethics support mechanisms in healthcare are increasing but little is known about the specific developments in elderly care. The aim of this paper is to present a systematic literature review on the characteristics of existing ethics support mechanisms in institutional elderly care. A review was performed in three electronic databases . Sixty papers were included in the review. The ethics support mechanisms are classified in four categories: ‘institutional bodies’ ; ‘frameworks’ ; ‘educational programmes and moral case deliberation’; (...) and ‘written documents and policies’. For each category the goals, methods and ways of organising are described. Ethics support often serves several goals and can be targeted at various levels: case, professional or organisation. Over the past decades a number of changes have taken place in the development of ethics support in elderly care. Considering the goals, ethics support has become more outreaching and proactive, aiming to qualify professionals to integrate ethics in daily care processes. The approaches in clinical ethics support have become more diverse, more focused on everyday ethical issues and better adapted to the concrete learning style of the nursing staff. Ethics support has become less centrally organised and more connected to local contexts and primary process within the organisation. (shrink)

This article presents an ethics support instrument for healthcare professionals called CURA. It is designed with a focus on and together with nurses and nurse assistants in palliative care. First, we shortly go into the background and the development study of the instrument. Next, we describe the four steps CURA prescribes for ethical reflection: (1) Concentrate, (2) Unrush, (3) Reflect, and (4) Act. In order to demonstrate how CURA can structure a moral reflection among caregivers, we discuss how a (...) case was discussed with CURA at a psychogeriatric ward of an elderly care home. Furthermore, we go into some considerations regarding the use of the instrument in clinical practice. Finally, we focus on the need for further research on the effectiveness and implementation of CURA. (shrink)

The article presents the results of research on the relationship between social support and self-care of people with myocardial infarction. 127 patients treated in a rehabilitation centre participated in the study. The Inventory of Socially Supportive Behaviours and the Self-care Questionnaire developed by the author, were used. The findings suggest that persons receiving little support are characterised by lower level of self-care than people with medium and high level of support. No such difference was noted between (...) people with medium and high support level. This suggests that social support is of considerable importance for the changes in the level of self-care only in the case of people previously receiving little support. The research also indicates that informational support is related to higher level of self-care whereas instrumental support is related to lower level of self-care. Emotional support was significant only for the care for social functioning. (shrink)

Evaluating the feasibility and first perceived outcomes of a newly developed clinical ethics support instrument called CURA. This instrument is tailored to the needs of nurses that provide palliative care and is intended to foster both moral competences and moral resilience. This study is a descriptive cross-sectional evaluation study. Respondents consisted of nurses and nurse assistants (n = 97) following a continuing education program (course participants) and colleagues of these course participants (n = 124). Two questionnaires with five-point Likert (...) scales were used. The feasibility questionnaire was given to all respondents, the perceived outcomes questionnaire only to the course participants. Data collection took place over a period of six months. Respondents were predominantly positive on most items of the feasibility questionnaire. The steps of CURA are clearly described (84% of course participants agreed or strongly agreed, 94% of colleagues) and easy to apply (78–87%). The perceived outcomes showed that CURA helped respondents to reflect on moral challenges (71% (strongly) agreed), in perspective taking (67%), with being aware of moral challenges (63%) and in dealing with moral distress (54%). Respondents did experience organizational barriers: only half of the respondents (strongly) agreed that they could easily find time for using CURA. CURA is a feasible instrument for nurses and nurse assistants providing palliative care. However, reported difficulties in organizing and making time for reflections with CURA indicate organizational preconditions ought to be met in order to implement CURA in daily practice. Furthermore, these results indicate that CURA helps to build moral competences and fosters moral resilience. (shrink)

Evaluating the feasibility and first perceived outcomes of a newly developed clinical ethics support instrument called CURA. This instrument is tailored to the needs of nurses that provide palliative care and is intended to foster both moral competences and moral resilience. This study is a descriptive cross-sectional evaluation study. Respondents consisted of nurses and nurse assistants (n = 97) following a continuing education program (course participants) and colleagues of these course participants (n = 124). Two questionnaires with five-point Likert (...) scales were used. The feasibility questionnaire was given to all respondents, the perceived outcomes questionnaire only to the course participants. Data collection took place over a period of six months. Respondents were predominantly positive on most items of the feasibility questionnaire. The steps of CURA are clearly described (84% of course participants agreed or strongly agreed, 94% of colleagues) and easy to apply (78–87%). The perceived outcomes showed that CURA helped respondents to reflect on moral challenges (71% (strongly) agreed), in perspective taking (67%), with being aware of moral challenges (63%) and in dealing with moral distress (54%). Respondents did experience organizational barriers: only half of the respondents (strongly) agreed that they could easily find time for using CURA. CURA is a feasible instrument for nurses and nurse assistants providing palliative care. However, reported difficulties in organizing and making time for reflections with CURA indicate organizational preconditions ought to be met in order to implement CURA in daily practice. Furthermore, these results indicate that CURA helps to build moral competences and fosters moral resilience. (shrink)

Clinical ethics support for health care professionals and patients is increasingly seen as part of good health care. However, there is a key drawback to the way CES services are currently offered. They are often performed as isolated and one-off services whose ownership and impact are unclear. This paper describes the development of an integrative approach to CES at the Center of Expertise and Care for Gender Dysphoria at Amsterdam University Medical Center. We specifically aimed to integrate (...) CES into daily work processes at the CEGD. In this paper, we describe the CES services offered there in detail and elaborate on the 16 lessons we learned from the process of developing an integrative approach to CES. These learning points can inform and inspire CES professionals, who wish to bring about greater integration of CES services into clinical practice. (shrink)

Clinical ethics support for health care professionals and patients is increasingly seen as part of good health care. However, there is a key drawback to the way CES services are currently offered. They are often performed as isolated and one-off services whose ownership and impact are unclear. This paper describes the development of an integrative approach to CES at the Center of Expertise and Care for Gender Dysphoria at Amsterdam University Medical Center. We specifically aimed to integrate (...) CES into daily work processes at the CEGD. In this paper, we describe the CES services offered there in detail and elaborate on the 16 lessons we learned from the process of developing an integrative approach to CES. These learning points can inform and inspire CES professionals, who wish to bring about greater integration of CES services into clinical practice. (shrink)

Clinical ethics support (CES) for health care professionals and patients is increasingly seen as part of good health care. However, there is a key drawback to the way CES services are currently offered. They are often performed as isolated and one-off services whose ownership and impact are unclear. This paper describes the development of an integrative approach to CES at the Center of Expertise and Care for Gender Dysphoria (CEGD) at Amsterdam University Medical Center. We specifically aimed (...) to integrate CES into daily work processes at the CEGD. In this paper, we describe the CES services offered there in detail and elaborate on the 16 lessons we learned from the process of developing an integrative approach to CES. These learning points can inform and inspire CES professionals, who wish to bring about greater integration of CES services into clinical practice. (shrink)

This commentary on “Her Own Decision: Impairment and Authenticity in Adolescence” by Campbell, Derrington, Hester, and Lew adds further consideration of obligations for guardians and physicians of minors who struggle in making serious decisions regarding medical treatment.

BackgroundThe academic and medical literature highlights the positive effects of empathy for patient care. Yet, very little attention has been given to the impact of the requirement for empathy on the physicians themselves and on their emotional wellbeing.DiscussionThe medical profession requires doctors to be both clinically competent and empathetic towards the patients. In practice, accommodating both requirements can be difficult for physicians. The image of the technically skilful, rational, and emotionally detached doctor dominates the profession, and inhibits physicians from (...) engaging emotionally with their patients and their own feelings, which forms the basis for empathy. This inhibition has a negative impact not only on the patients but also on the physicians. The expression of emotions in medical practice is perceived as unprofessional and many doctors learn to supress and ignore their feelings. When facing stressful situations, these physicians are more likely to suffer from depression and burnout than those who engage with and reflect on their feelings. Physicians should be supported in their emotional work, which will help them develop empathy. Methods could include questionnaires that aid self-reflection, and discussion groups with peers and supervisors on emotional experiences. Yet, in order for these methods to work, the negative image associated with the expression of emotions should be questioned. Also, the work conditions of physicians should improve to allow them to make use of these tools.SummaryEmpathy should not only be expected from doctors but should be actively promoted, assisted and cultivated in the medical profession. (shrink)

Conversation analysis of 53 emotive responses to troubles tellings on a peer support line discovered eight different methods for expressing empathy and/or sympathy. Emotive reactions, assessments, and formulating the gist of the trouble typically occur early on in a troubles telling. Reporting one’s own reaction was found in the midst of troubles telling, as a second reaction to ‘bad’ news or after callers’ reports of their own feelings. Naming another’s feelings and using an idiom occur towards the end of a (...) troubles telling. Sharing a similar experience of similar feelings and expressing one’s feelings were used in various places within a troubles telling and conveyed more than basic concern about the callers’ feelings. These and other differences between methods further detail the various ways support providers and recipients perform empathy and/or sympathy in situ. (shrink)

The right to refuse medical intervention is well established, but it remains unclear how best to respect and exercise this right in life support. Contemporary ethical guidelines for critical care give ambiguous advice, largely because they focus on the moral equivalence of withdrawing and withholding care without confronting the very real differences regarding who is aware and informed of intervention options and how patient values are communicated and enacted. In withholding care, doctors typically withhold information about interventions (...) judged too futile to offer. They thus retain greater decision-making burden and face weaker obligations to secure consent from patients or proxies. In withdrawing care, there is a clearer imperative for the doctor to include patients in decisions, share information and secure consent, even when continued life support is deemed futile. How decisions to withhold and withdraw life support differ ethically in their implications for positive versus negative interpretations of patient autonomy, imperatives for consent, definitions of futility and the subjective evaluation of benefits and burdens of life support in critical care settings are explored. Professional reflection is required to respond to trends favouring a more positive interpretation of patient autonomy in the context of life support decisions in critical care. Both the bioethics and critical care communities should investigate the possibilities and limits of growing pressure for doctors to disclose their reasoning or seek patient consent when decisions to withhold life support are made. (shrink)

Person‐centred care, with its central focus on the patient in partnership with healthcare practitioners, is considered to be the contemporary gold standard of care. This type of care implies effective communication from and by both the patient and the healthcare practitioner. This is often problematic in the case of the paediatric population, because of the many communicative challenges that may arise due to the child's developmental level, illness and distress, linguistic competency and disabilities. The principle of universal (...) design put forth in conventions and legislation means that the design of products and services should be usable by all people, to the greatest extent possible. Augmentative and alternative communication encompasses strategies, for example pictures and apps, that are typically used with people with communication disability. In this position paper, we argue for the universal use of augmentative and alternative communication to support person‐centred communication and care for children, regardless of age or potential disability. Clinical examples are shared from three different paediatric care settings where pictorial supports were applied universally. Interviews were conducted with children and adolescents (with and without disabilities), parents and healthcare practitioners, and the principles of universal design were used as a framework to demonstrate how person‐centred communication is supported in paediatric care. (shrink)

There are various reasons why efforts to promote “support for self-management” have rarely delivered the kinds of sustainable improvements in healthcare experiences, health and wellbeing that policy leaders internationally have hoped for. This paper explains how the basis of failure is in some respects built into the ideas that underpin many of these efforts. When support for self-management is narrowly oriented towards educating and motivating patients to adopt the behaviours recommended for disease control, it implicitly reflects and perpetuates limited and (...) somewhat instrumental views of patients. It tends to: restrict the pursuit of respectful and enabling ‘partnership working’; run the risk of undermining patients’ self-evaluative attitudes ; limit recognition of the supportive value of clinician-patient relationships; and obscure the practical and ethical tensions that clinicians face in the delivery of support for self-management. We suggest that a focus on enabling people to live well with their long-term conditions is a promising starting point for a more adequate conception of support for self-management. We then outline the theoretical advantages that a capabilities approach to thinking about living well can bring to the development of an account of support for self-management, explaining, for example, how it can accommodate the range of what matters to people for living well, help keep the importance of disease control in perspective, recognize social influences on people’s values, behaviours and wellbeing, and illuminate more of the rich potential and practical and ethical challenges of supporting self-management in practice. (shrink)

Caring science that has a foundation in ‘lived experience’ may be viewed as a ‘patient science’, in other words nursing has its starting point in the patient’s perspective. To support in learning caring science, the learning situation has to embrace the students’ lived experience in relation to the substance of caring science. One of the challenges in education involves making theoretical meanings vivid in the absence of actual patients. Written patient narratives and fiction like novels in combination with scientific literature (...) are often used in order to obtain lived experiences as the foundation for teaching. Questions concerning how film can be used in this context to support the learning of caring science have recently emerged. The aim of this study is to describe how film as learning-support may boost reflection when learning caring science. The data was collected through audio-taped seminars, written reflections and group-interviews with students on basic, advanced, and doctoral levels. The analysis is based on the Reflective Lifeworld Research (RLR) approach which is founded in phenomenology. The results show how film as a learning-support enhances the understanding of the caring science theory, and provides a deeper understanding of the subject. Film can be very touching and provides support for the students’ embodied reflections. Hence, it is important that the students are encouraged to watch films from a caring science perspective. This requires a structure for learning-support related to the film, such as having a focus and purpose for watching the film, as well as support for follow-ups. The film itself does not create such support and guidance; instead, it must be combined with well-considered pedagogic thoughts on what learning is and how learning can be supported. The results are highlighted with the help of Maurice Merleau-Ponty’s philosophy of ‘the lived body’, and ‘the flesh of the world’. Indo-Pacific Journal of Phenomenology , Volume 12, Special Edition July 2012. (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)