PurposeThe purpose of this paper is to analyse how standardisation influences home care work practice.Design/methodology/approachThe paper presents a qualitative interview‐based case study from the elderly care sector in a Danish council. The interviews reveal care workers and administrative staffs' interpretation of how the implementation of IT and standards affects their work situation. Findings from the case study are supported by a large‐scale quantitative study regarding organisational transformations in the elderly care sector.FindingsThe paper discusses how standardisation, in the form of implementation (...) of IT‐systems and categorization tools, influences the potential for development of competencies. The findings show that an engaged practice is difficult to maintain when working under circumstances characterized by lack of time and a requirement for standardisation and documentation.Originality/valueThe study provides insight into the divergence between standards and the importance of relying on experience‐based knowledge and value rational skills in relation to care work. The paper stresses the point that standards are necessary to coordinate workflow activities and support decision making. Nevertheless, it is shown that when reification dominates, the degree of standardisation will lend itself to an instrumental practice not supportive of growing competencies within the field of care giving. (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)

Background: Surveillance technology such as tag and tracking systems and video surveillance could increase the freedom of movement and consequently autonomy of clients in long-term residential care settings, but is also perceived as an intrusion on autonomy including privacy. Objective: To explore how clients in residential care experience surveillance technology in order to assess how surveillance technology might influence autonomy. Setting: Two long-term residential care facilities: a nursing home for people with dementia and a care facility for people with intellectual (...) disabilities. Methods: Ethnographic field study. Ethical considerations: The boards representing clients and relatives/proxies of the clients were informed of the study and gave their written consent. The clients’ assent was sought through a special information leaflet. At any time clients and/or proxy were given the option to withdraw from the study. The research protocol was also reviewed by a medical ethics committee. Findings: Our findings show a pattern of two themes: (1) coping with new spaces which entailed clients: wandering around, getting lost, being triggered, and retreating to new spaces and (2) resisting the surveillance technology measure because clients feel stigmatized, missed the company, and do not like being “watched.” Conclusion: Client experiences of surveillance technology appear to entail a certain ambivalence. This is in part due to the variety in surveillance technology devices, with each device bringing its own connotations and experiences. But it also lies in the devices’ presupposition of an ideal user, which is at odds with the actual user who is inherently vulnerable. Surveillance technology can contribute to the autonomy of clients in long-term care, but only if it is set in a truly person-centered approach. (shrink)

It may seem paradoxical to speak of the ‘goodlife’ for demented elderly. Many people consider dementia to be a life-wrecking disease and nursing homes to be terrible places. Still, it is relevant to ask how we can make life as good as possible for demented nursing home residents. This paper explores what three standard philosophical accounts of well-being — subjective preference theory, objectivist theories, and hedonism — have to say about the good life for demented people. It is concluded that (...) the relevant differences between the various philosophical theories manifest themselves not so much in their general account of the substantial content of ‘the good life’ but in a number of specific controversies. These concern the nature of well-being, the necessity of endorsement by the patient, the value of experience and the need for experiences to be rooted in reality. Moreover, it is argued that further research should pay detailed attention to the process of dementia and to the effects of this process on patients' identities, self-conceptions, capacities, preferences, values and the like, and that a narrative approach which incorporates the factor time may offer a more comprehensive account of the good life for demented elderly. (shrink)

Background The smart home-based elder care presents a promising technological solution to address the challenges of aging. However, it has also unveiled a spectrum of ethical concerns, which may cause older adults to submit to negative emotions and psychological pressure. Aim To delineate the ethical dilemmas encountered by older adults in the context of smart home-based elder care, and to construct a model that elucidates the ethical issues across different dimensions. Research design This study follows a qualitative phenomenological research design. (...) Participants and research context The sample comprised 15 older adults and 10 adult children in two communities in Jinan, Shandong, China. Structured, in-depth interviews were performed to collect data and the Colaizzi descriptive analysis framework was adopted to analyze data. An ethical dilemma model was constructed based on framework of the Society Ecosystems Theory. Ethical considerations The proposal was approved by the Research Ethics Committee of the Second Hospital of Shandong University, China. Participation in this study was voluntary. Written and verbal consent was gained. All recordings were kept under the principle of confidentiality. Results Ethical dilemmas of smart home-based elder care were grouped into three themes with 10 sub-themes, and a model composed of three systems was built based on these findings. Discussion The ethical dilemmas experienced by the older adults with smart home-based elder care were various and multi-layered, which could be elucidated by the ethical dilemma model. Conclusion The model emphasizes the necessity for collaborative efforts among the whole society and the elderly individuals. Tailored support strategies should be implemented to address the ethical dilemmas of the macro, meso, and micro system. The results may improve the elderly population to receive a more content and convenient elder care experience. (shrink)

Care workers frequently withdraw from elderly people in their care; this has resulted in a number of scandals in the media. Here I analyze an empirical scene observed at an old people’s home in Denmark, which contains behavioral patterns among the care workers which could be seen as withdrawal. At the same time it illustrates the care workers' commitment to the elderly. A paradoxical "empathy at a distance" is characteristic of the scene. When analyzing my written observations in an interpretation (...) group, my use of language was a point of discussion. What did it mean when I described the interactions between care workers and elderly residents in words commonly used to describe mother-child interactions? My use of language became a "hermeneutical key" which enabled a psychoanalytically inspired interpretation. This focuses on the care relationship as activating our earliest memories of our own care relations, independently of whether we are in the role of care providers or care receivers. Through collusion theory, the interpretation accepts both the anxiety which the helpless elderly people arouse in the care workers and their motivation for care work as two sides of a subjectively important theme. The article illustrates how working consciously with the researcher's subjectivity makes it possible to understand apparently irrational patterns. The insights thus gained may be used to prevent withdrawals in care work as an argument for care workers’ need for emotional supervision. (shrink)

This study examines elderly residential life in long-term care settings, focusing on the ways residents interact with their physical and social environments. It further proposes that the residential environment is an important player for everyday ethics in long-term care settings, and is also an important factor in enhancing the quality of life for residents. By employing the theories of place identity and environmental meanings and listening to the voices of the elderly collected through an ethnographic field study in elderly homes (...) of life care, the study reveals the residents’ experiences of going through declining health and moving through the stages of care. Two major themes were identified. The first theme of liminal life portrays the elders’ fears as they move through the stages of care. This theme includes four sub-themes: the loss of home and the loss of autonomy; impending loss and its constant reminders; the social classification of “us” and “them”; the irreversibility of moving. The second theme of relational life describes the keys to successful transitions as experienced and told by the residents. The second theme includes three sub-themes: shifting identity and the acceptance of old age; human interdependence and building trust; an accompanied death. Study implications are further discussed, including specific suggestions for social programs and revisions to the physical environments. A more fundamental question about place-based staged care is also raised so as to serve as a point of departure for reflections and discussions amongst health professionals, planners and designers, and other decision-makers. (shrink)

The aim of this study was to explore ethically problematic situations in the long-term nursing care of elderly people. It was assumed that greater awareness of ethical problems in caring for elderly people helps to ensure ethically high standards of nursing care. To obtain a broad perspective on the current situation, the data for this study were collected among elderly patients, their relatives and nurses in one long-term care institution in Finland. The patients (n=10) were interviewed, while the relatives (n=17) (...) and nurses (n=9) wrote an essay. Interpretation of the data was based on qualitative content analysis. Problematic experiences were divided into three categories concerning patients’ psychological, physical and social integrity. In the case of psychological integrity, the problems were seen as being related to treatment, self-determination and obtaining information; for physical integrity, they were related to physical abuse and lack of individualized care; and for social integrity, to loneliness and social isolation. This study provided no information on the prevalence of ethical problems. However, it is clear from the results that patient integrity warrants more attention in the nursing care of elderly patients. (shrink)

Background: As a non–European Union member state, Albania is increasingly orienting itself on Western models regarding human rights, patient rights, and legal regulations for healthcare. Due to its limited fiscal and legal power, enforcing legal and ethical regulations poses a major problem. Aim: The aim of this study is to investigate nurse’s knowledge and experiences regarding ethical and legal issues in Albanian elder care in state-funded and privately run institutions. Research design: The study was conducted using an inductive and qualitative (...) design, utilizing a focused ethnographic approach, based on Roper and Shapira’s framework. Method: Data were collected between June 2017 and September 2018 using participant observation, field notes, and semi-structured interviews with 15 nurses in seven different elder care institutions. In total, 100 h of observation and 15 interviews were performed. Data analysis was based on Mayring’s qualitative content analysis. Ethical consideration: The approval for the study was obtained from UMIT—The Health and Life Sciences University, Austria. Findings: The findings of the study fell into the following main categories: “Everyday care issues,” “End-of-life issues,” “Legal issues,” and “Ethical-legal education and conflicts.” Discussion: The participants reported many ethical and legal issues when describing their everyday challenges and displayed a strong lack of ethical and legal education. Despite a wide spectrum in the quality of care between private and state-funded nursing homes, older people mostly do not know their own diagnosis. Conclusion: This study indicates that further ethical and legal education is needed. Furthermore, nurses need to be better prepared for ethical conflicts with families, as strengthening patient rights could come into conflict with traditional rights of the Albanian family. (shrink)

From the state to the family: reconfiguring the responsibility for long‐term nursing care at homeThis paper discusses the implications of the shift in the location of the provision of healthcare services from healthcare institutions to the home, which has occurred or is projected to occur in coming years. It is argued that the responsibility for the provision of care and assistance needed by the elderly living at home and people with long‐term conditions living at home has shifted from public services (...) to the family. Studies of care‐givers have shown that in many situations they experience tremendous burdens, financial difficulties and health problems. Their social lives have been confined to the home, and contacts with friends and neighbors have been significantly reduced. This situation needs to be addressed by nurses, who in many cases serve as the bridge between the home and the official healthcare system. Using Foucault’s exploration of power, particularly his idea of governmentality, a genealogy of care‐giving in the home in Iceland’s health‐care has been constructed. The main findings were that, although this is occurring somewhat later than in many other countries, the state is withdrawing from its previously defined responsibility for the health and well‐being of the nation. At the same time the citizen’s responsibility for maintaining health is emphasized. Based on these findings, the argument is made that nurses in Iceland can have a profound influence on policy‐making in relation to the organization of services provided in those homes. Suggestions are made as to how this can be done, which may be of interest to nurses in other countries. (shrink)

Background: Neglect and abuse of elders in care institutions is a recurring issue in the media. Elders in care institutions are vulnerable due to their physical, cognitive, and verbal limitations. Such vulnerabilities may make them more susceptible to mistreatment by caregivers on whom they are heavily dependent. Objectives: The goal was to understand caregivers’ concerns about ensuring correct and proper treatment, as well as their experiences with neglect and abuse of older patients. This article examines resources and challenges of professional (...) ethics within the care setting. Research design: A study was conducted to explore the quality of care provided to older patients in nursing homes, geriatrics institutions, and ambulant care in the northwest region of Switzerland. Participants and research context: A total of 23 semi-structured interviews were conducted with nursing staff of varying experience levels. Ethical considerations: Ethical approval was granted by the competent regional ethics commission, Ethikkomission Nordwest-und Zentralschweiz EKNZ [Ethics Commission Northwest and Central Switzerland] (2014-015). Findings: Three themes emerged from our data analysis: professional identity, professional context, and professional relationships. Our findings indicate mutual vulnerabilities within these three themes, characterizing the interactions between nursing staff and older patients. Study participants believe that incidences of error, neglect, and abuse are consequences of their own vulnerability since they are not able to meet the demands of an overstraining work situation. Discussion: Different aspects of this mutual vulnerability are described and critically discussed as challenges for professional ethics. Conclusion: Early education, continuous training as well as better management and response from the institution are necessary to maintain professionalism while handling mutual vulnerabilities. (shrink)

Within the caring science paradigm, variations of a method of interpretation inspired by the French philosopher Paul Ricoeur's theory of interpretation are used. This method consists of several levels of interpretation: a naïve reading, a structural analysis, and a critical analysis and discussion. Within this paradigm, the aim of this article is to present and discuss a means of creating distance in the interpretation and the text structure by using narration in a poetic language linked to the meaning of the (...) text. Ricoeur's ‘Hermeneutical function of distanciation’ will be introduced, and this concept of distanciation will be illustrated with reference to narrations from a study of patient's life experiences living with chronic illness and home mechanical ventilation in Denmark. Distanciation in the interpretation objectifies the text, and narration in a poetic language creates a particular kind of mediation in the interpretation. That narration represents an interpreted understanding of the whole, which facilitates an appropriate and evocative presentation of the interpreted data. This way of objectifying the text through narration can contribute yet another perspective to Ricoeur's rich and varied theory of interpretation. (shrink)

Background: Critical care nurses have risked their lives and in some cases their families through hazardous duty during the COVID-19 pandemic and have faced multiple ethical challenges. Research/aim: The purpose of our study was to examine how critical care nurses coped with the sustained multi-faceted pressures of the critical care environment during the unchartered waters of the COVID-19 pandemic. It was anticipated that our study might reveal numerous ethical challenges and decision points. Research design: A qualitative descriptive study, utilizing an (...) interpretivist paradigm. Participants and research setting: Critical care nurses, working in either intensive care units or emergency departments (N = 11) who were primarily from Northern California hospitals. Individual in-depth ZOOM® session interviews, guided by semi-structured questions, were used to collect data. Interviews lasted between 18 and 59 min, with an average length of 33 min. Session interviews were transcribed and analyzed. Ethical considerations: This study was approved by the researchers’ university Institutional Review Board. Findings: Five main themes emerged: Fear of the Unknown, Adapting to Practice Changes and Challenges, Patient Advocacy and Moral Distress, Isolation and the Depersonalization of Care, and Professionalism and a Call to Duty. Discussion and conclusion: Fear of becoming ill or bringing COVID-19 home to their families was a constant source of anxiety for nurses. There were numerous changes in policy and challenges to standard practice protocols, including most notably shortages in personal protective equipment, which nurses navigated resourcefully. Most nurses interviewed were motivated by a sense of professional duty. The nurses experienced some moral distress in their inability to advocate as they might like for their patients, especially at end of life. Infection control requirements for isolation. (shrink)

Background: Several studies have investigated the experiences of first-generation immigrant nurses in new workplaces. Yet, little is known about how native nurses and newcomers collaborate in their care for aging residents in European nursing homes. Objective: To gain a deeper understanding of interactions between first-generation immigrant nurses and native nurses in their care for aging residents in a Dutch nursing home. Methods: Ethnography, including 105 h of shadowing immigrant and native nurses, 8 semi-structured interviews with 4 immigrant and 4 established (...) nurses, and 2 focus group discussions with 8 immigrant and 6 established nurses in a Dutch nursing home. Data were analyzed by a post-positivist grounded theory coding approach. Ethical consideration: The Medical Ethical Review Committee of the Leiden University Medical Center approved this study. Results: The interactions between established staff and newcomers were influenced by norms, rules and regulations, policies and protocols. In daily practice and institutional structure, we observed both opportunities and challenges. The strict time schedules and the requisite standards of care were opportunities related to nurses’ expectations. Residents’ needs were sometimes challenging and inhibited newcomers’ active participation. However, sometimes new practices were developed where nurses created common ground, tinkered, and formed an inclusive playing field to enact good care. Conclusion/ discussion: This study shows that despite obstacles, there was room to make small changes in the rules of the game of nursing. These moments of tinkering may be sufficient to establish a stable, inclusive workforce for first-generation immigrants and give room to the evolvement of hybrid professional identities. Implications: The findings of this Dutch study are relevant for nursing ethics related to “good care” and nurses in other cultural contexts on how the integration of immigrant nurses in European countries in general could be facilitated. (shrink)

The purpose of this study was to illuminate the ethically difficult situations experienced by care providers working in a nursing home. Individual interviews using a narrative approach were conducted. A phenomenological-hermeneutic method developed for researching life experience was applied in the analysis. The findings showed that care providers experience ethical challenges in their everyday work. The informants in this study found the balance between the ideal, autonomy and dignity to be a daily problem. They defined the culture they work in (...) as not supportive. They also thought they were not being seen and heard in situations where they disagree with the basic values of the organization. The results are discussed in terms of Habermas’s understanding of modern society. Care settings for elderly people obviously present ethical challenges, particularly in the case of those suffering from dementia. The care provider participants in this study expressed frustration and feelings of powerlessness. It is possible to understand their experiences in terms of Habermas’s theory of modern society and the concept of the system’s colonization of the life world. (shrink)

This article documents the results of a study on the perceptions of long-term elder care in Beijing in the People's Republic of China by those most intimately involved. The study asked a sample of elderly, family members, and health care professionals, all of whom are involved in care at a variety of long-term care facilities in Beijing, about their perceptions of the care given at these facilities from their particular standpoints as regards issues such as the quality and ideal location (...) of care, decision-making regarding the care receiving, who should be responsible for the financing of care, and the meaning of dignity for the elderly in these facilities. The results showed adherence to traditional family values at least on one level regarding the ideal location of care being with the family and in the home, but also the desire to pass on financing of long-term care facilities and the health care they provide the elderly on to the government. These results are not altogether surprising, but they also clearly demonstrate the larger conflict between traditional views about morality and economic considerations regarding health care financing in the China. (shrink)

Part of the rationale behind public health measures is protecting the vulnerable. One of the groups most vulnerable to COVID-19 are the elderly and, consequently, many countries adopted public health measures that aimed to keep the elderly safe. The effectiveness and the consequences of those measures, however, leaves a lot to be desired. In my article, I will look at the steps that the Nordic countries took to protect their elderly and assess their success. I will further analyze those in (...) the light of standard ethical theories. Public health crises often call for choices between two evils. Selecting patients for intensive care is one such choice, and again, it seems that for the elderly, the outcome was less than favorable. Overall, from the point of view of ethics, many countries failed miserably when it came to the treatment of the elderly. I will end my paper by discussing the lessons we can learn from the COVID-19 pandemic and suggests measures we need to take to offer genuine respect for the rights of the elderly. (shrink)

Smart homes create a beneficial environment for the lives of elderly people and enhance the quality of their home lives. This study aims to explore the design of age-friendly interfaces that can meet the emotional needs of self-care elderly people from the perspective of functional realization of the operating interface. Sixteen elderly users aged fifty-five and above were selected as subjects with healthy eyes and no excessive drooping eyelids to obscure them. Four representative age-friendly applications with different interface designs were (...) selected from the Android application market as the stimulus material for the experiment, and a total of fifteen pages were browsed independently. During the experiment, the ErgoLAB human-computer environment synchronization cloud platform was used to monitor and record the subjects' multidimensional physiological indicators of eye movements, skin electricity, and heart rate variability when using different styles of mobile application interfaces. Combined with the post-experimental PAD emotion scale data, the preferences of emotional interface design elements of the self-care elderly were analyzed to guide the subsequent design practice. The results show that: on the layout characteristics of the home page, a simple and intuitive multi-column layout or card layout combined with a bottom navigation bar type main navigation is used; on the choice of the main color, a single color with low saturation is used as the main color, with high saturation color accents to play a role in highlighting key information; on the information density of the home page, a moderate proportion of graphics and text is adopted, with low information density; on the arrangement of the page content, they try to give priority to information content with high user relevance. (shrink)

Background: Dignity experience in the daily lives of people living with dementia is influenced by their relational interactions with others. However, literature reviews show that knowledge concerning crucial interactional qualities, preserving their sense of dignity, is limited. Aim: The aim of this study was to explore and describe crucial qualities of relational interactions preserving dignity experience among people with dementia, while interacting with family, social network, and healthcare professionals. Methodology: The study was founded upon Gadamer’s philosophical hermeneutics, and an exploratory (...) design employing qualitative research interviews was conducted. Participants and research context: A total of 11 individuals diagnosed with mild to moderate dementia, living in their own homes, were recruited from two Hospital Memory Clinics in Norway. Ethical considerations: In recruiting persons with dementia as study participants, sensitivity toward their life history, autonomy, integrity, relationships, and dignity is essential. These standards, and the ethical principles of moral sensitivity to their vulnerability, doing no harm, showing justice, and respecting their personal utility, guided our research. Results: Three main interactional qualities preserving the participants’ dignity experience were found: Experiencing love and confirmation; experiencing social inclusion and fellowship; experiencing humane warmth and understanding within a caring culture, while being met as an equal human being. A total of 10 sub-qualities were identified within these 3 main qualities. Discussion and final considerations: Dignity experience among the participants was preserved when certain interactional qualities were present in their interactions with family, social network, and healthcare professionals. While supporting some of the findings of previous studies, this study adds new knowledge on the subject. Knowledge of relational interactions toward preserving dignity experience should be a fundamental part of future dementia care practice. Based on the results of this study, an empirical–theoretical model was developed for this purpose. (shrink)

Background Healthy aging is one of the essential aspects of a health promotion program in the elderly. Aim Exploring ethical challenges in healthy elderly care from the perspective of nurses, older adults, and families in the Iranian context. Research Design This qualitative study was conducted using a content analysis approach in 4 health centers in northeastern Iran from 2017 to 2019. Semi-structured interviews, observation, review of elderly files, and focus groups were used to collect data. Ethical considerations The ethics committee (...) of the university approved this study in Iran. This study adhered to the principles of the Helsinki Declaration. Ethical principles autonomy, confidentiality, and anonymity were considered for the participants. Participants were informed about the purpose of the study and submitted written informed consent regarding their participation. Findings The central theme was: An unfair approach to caring for healthy older adults. The three categories were as follows: Forgotten human care, disrespect, and lack of a meaningful and trustworthy relationship. The 14 subcategories highlighted the ethical challenges of healthy aging care in health centers. Discussion The findings showed that due to nurses’ unfamiliarity with the concept of healthy aging, older adults are discriminated against in care centers. Creating a standard care program for healthy older adults ensures that ethical principles are followed for these clients. Conclusion Various individual and organizational factors lead to an unfair approach to caring for healthy elderly in health centers. The following factors can help improve the care of healthy aging and reduce ethical challenges in this area: Introducing nurses to the concept of healthy old age and its dimensions, creating a community-based approach in health centers, prioritizing health issues over health issues, Involvement of families and older adults in needs assessment-goal setting-implementation and evaluation of health services, and design of home visit programs to provide services to healthy elderly. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Witnessing Trauma:Emotional Challenges in Medical InterpretationMaja Milkowska-ShibataHaving a background in public health but no clinical experience, I never expected to be given the opportunity to work directly with patients. This changed when I became involved in medical interpretation. During my first year of service, I mostly assisted with primary care appointments until I was assigned to my first appointment in a cancer treatment center. The moment I stepped into (...) the distinctive atmosphere of that place, the gravity of the patients' circumstances became strikingly apparent. Each individual was [End Page E8] suffering from a life-threatening condition, which was unlike anything I was used to witnessing.The staff seemed to know each and every patient. I noticed a patient in a wheelchair accompanied by a relative carrying an oxygen tank. Someone brought gifts for the receptionists. A Christmas tree sat in the corner of the waiting area, ready for the holidays. The facility clearly conveyed an effort to resemble a home-like environment. "They must be regulars," I thought grimly.After completing a routine appointment with an elderly patient who was feeling weak, the patient requested an IV drip. My official assignment was over, and I could have gone home at that point, but something compelled me to stay. As I interpreted the nurse's instructions for setting up the drip, I could not help but notice the vulnerability of the patient, who had a thin and frail physique. The patient seemed grateful for my presence, so I settled into a chair in the corner and waited patiently.Soon, the patient drifted off to sleep, and I checked on them every now and again to make sure they were fine. The room became quiet, and I hoped the patient would not be disturbed by the sound of an ambulance or another patient seeking treatment. Although they were in capable hands, I found myself standing guard, metaphorically speaking. During the two hours it took for the drip to finish, I reflected on the emotions growing within me.It suddenly dawned on me: I had not been there for my own father during his battle with cancer. I felt obligated to stay by the patient's side as if fulfilling a debt owed for my absence at that important time. Offering companionship to the patient was the very least I could do.Working as medical interpreters and interacting with patients in varied life and health circumstances will expose us to a wide range of emotions. As we gain experience, helping patients teaches us humility and cultivates a stronger sense of empathy. Although not explicitly outlined in the standards of practice, we have the choice to utilize the powerful virtues of compassion and kindness to positively impact the life of a struggling patient. However, we also run the risk of becoming emotionally detached and losing the ability to act with compassion over time.Alongside my on-site commitments, I also work remotely for an organization managing a high volume of calls in numerous languages. In this role, medical consultations occur via phone or video. This environment can make you feel somewhat isolated, reminiscent of working in a call center where strict protocols dictate the ways calls begin and end. In this setting, I am exposed to slightly different emotional challenges. Shielded by a screen and physical distance, I often feel disconnected when interpreting, even for highly emotional situations.Yet, some interactions are hard to forget. I vividly remember a recent call during which I had to interpret for a victim of sexual assault. I felt deeply moved by their distraught voice and frightening details. For me, as an interpreter, the challenge became even more difficult as it was unreasonable to request the other party articulate their thoughts in short segments for effective communication. To keep up with the speaker, I had to jump into simultaneous interpreting, which many interpreters, including myself, find difficult. At the same time, I was slowed down by the police officer taking meticulous notes. I sympathized with the speaker but was also becoming impatient and angry with myself for experiencing these conflicting emotions. I wanted this call to end as soon as possible because it was... (shrink)

Houston, Texas, is a major U.S. city with, like many, a growing aging population. The purpose of this study and ultimate book chapter is to explore the views and perceptions of long-term care (LTC) residents, family members and health care providers. Individuals primarily in independent living and group residential settings were interviewed and studied. Questions emphasized the concepts of personal autonomy, dignity, quality and location of care and decision making. Although a small sample of participants were involved, consistency was noted. (...) Keeping the elderly in caring and loving home situations (theirs or family) was most preferred. Personal choice and independence were emphasized by residents, but family members needed to act as advocates. We also noted that the legal system emphasizes family control over individual decision making as competency declines with aging. Optimal personal decision making in the residents' best interest also became more difficult with loss of individual mental capacity. (shrink)

The aim of this study was to obtain an increased understanding of the experiences of elderly people in geriatric care, with special reference to integrity. Data were collected through qualitative interviews with elderly people and, in order to obtain a description of caregivers’ integrity-promoting or non-promoting behaviours, participant observations and qualitative interviews with nursing students were undertaken. Earlier studies on the integrity of elderly people mainly concentrated on their personal and territorial space, so Kihlgren and Thorsén opened up the possibility (...) of considering the concept of integrity from a broader view by recognizing its relationship to the larger framework of the self-concept. Based on this, findings in the present study indicate that elderly people’s integrity relating to their corporal self were the least violated. On the other hand, their psycological, information and cultural selves were the most exposed. The study also identified a further dimension (i.e. one relating to social self), which should be included in the concept of integrity because respecting elderly people’s social self reduces their feelings of loneliness, isolation and seclusion. In summary, the results indicate that the concept of integrity is complex and has several dimensions. (shrink)

Organizational changes are common in elder care today. Such changes affect caregivers, who are essential to providing good quality care. The aim of the present study was to illuminate caregivers’ experiences of working in elder care while under threat of organizational change and termination notice. Qualitative content analysis was used to examine interview data from 11 caregivers. Interviews were conducted at three occasions during a two‐year period. The findings show a transition in their experiences from ‘having a professional identity and (...) self‐confidence’, to ‘being a professional in a threatening situation caused by someone else’ and to ‘struggling to adapt to a changed working environment as a person and a professional’. The caregivers experienced a loss of pride and satisfaction. Previous literature indicates that this may have consequences for the quality of care and that employees may be at risk of negative health effects. However, the caregivers continued to struggle, doing their best to complete their duties. The study has implications for high‐level decision‐makers, managers and caregivers in similar work–life situations in that it deals with factors that facilitate or impede similar transitions. (shrink)

Due to the outbreak of COVID-19 many families experience the threat of the COVID-19. This study aims to explore the lived experiences, challenges, and coping mechanisms of COVID-19 Family Survivors. The study employed the Interpretative Phenomenological Analysis with ten (10) participants. Based on the findings, the following conclusions were drawn: (1) Most of the participants consulted health professionals for their medications and advised herbal medicines in boosting their immune system. (2) Family survivors had to make adaptations to their daily routines (...) and established stringent health standards in their homes, such as separating the parents' and children's rooms, using disposable utensils, and ensuring that every surface of their homes was clean. (3) They were able to meet their necessities due to the generosity of their neighbors. These people were helped financially by their employers, neighbors, churchmates, and loved ones. Similarly, the government offered a different forum for the COVID-19 Family survivors to receive help and assistance. (4) Despite the hardships they faced, COVID-19 family survivors did not lose hope that they would be cured of COVID-19. These people tried their hardest to maintain their health by eating good meals, sleeping early, obtaining enough sunlight in the morning, and carefully selecting the vitamins they took. (5) Finally, despite the difficult battle against COVID19, these individuals grew resilient by building their spiritual lives, exercising their faith, and being brave for the sake of their loved ones. (shrink)

An elderly patient in a care home only wants human nurses to provide her care – not robots. If she selected her carers based on skin colour, it would be seen as racist and morally objectionable, but is choosing a human nurse instead of a robot also morally objectionable and speciesist? A plausible response is that it is not, because humans provide a better standard of care than robots do, making such a choice justifiable. In this paper, I show why (...) this response is incorrect, because robots can theoretically care as well as human nurses can. I differentiate between practical caring and emotional caring, and I argue that robots can match the standard of practical care given by human nurses, and they can simulate emotional care. There is growing evidence that people respond positively to robotic creatures and carebots, and AI software is apt to emotionally support patients in spite of the machine’s own lack of emotions. I make the case that the appearance of emotional care is sufficient, and need not be linked to emotional states within the robot. After all, human nurses undoubtedly ‘fake’ emotional care and compassion sometimes, yet their patients still feel adequately cared for. I show that it is a mistake to claim that ‘the human touch’ is in itself a contributor to a higher standard of care; ‘the robotic touch’ will suffice. Nevertheless, it is not speciesist to favour human nurses over carebots, because carebots do not suffer as the result of such a choice. (shrink)

In this paper we discuss differing discourses of research ethics committees and the clinical research field. Reflections on our experience of conducting research in a nursing home are used to highlight the tensions and inconsistencies that arise from these discourses and the need to behave ethically in the field. While accepting the need for adherence to guiding principles of duty based ethics, we have found that practical moral decisions in the field required that, as individual researchers, we needed to exercise (...) discretionary judgement, informed by the ethic of care and the concern for the well‐being of research participants. (shrink)

The aim of this study was to explore patients’ experiences of using the Integrated Palliative care Outcome Scale (IPOS) during specialized palliative home care. The study adopted a qualitative approach with an interpretive descriptive design. Interviews were performed with 10 patients, of whom a majority were diagnosed with incurable cancer. Our findings suggest that the use of IPOS as a basis for conversation promotes safe care by making the patients feel confident that the care provided was adapted to them which (...) gives them a sense of safety. IPOS facilitated discussions between patients and nurses about care needs. The patients believed that using IPOS enabled reflection on their well‐being and life situation. In conclusion, the study finds that using IPOS is beneficial and provide ways to enable person‐centered care and with advantage could be used in specialized palliative home care. The results may help overcome barriers and facilitate the use of patient‐reported outcome measures (PROMs). To enable the use of PROMs such as IPOS in palliative home care, nurses need education and opportunities to develop routines that enable patients’ voice to be heard and thereby compose a basis for care. (shrink)

Older people living in a residential setting have the right to respectful care based on professional ethics. The aim of this study was to describe employees' and clients' lived experiences of elder abuse. A qualitative phenomenological method was used with 26 employees and 20 residents from four homes for elderly people in the town of Ostrava, Czech Republic, and two managers from outside these institutions. All complaints about elder abuse (n 5 11) received by Ostrava Municipal Authority during the period (...) 2003 to 2007 were examined. Two main dimensions of the examined phenomenon were identified: forms of elder abuse and causes of elder abuse. Established forms of elder abuse were summarized as rights violation, financial abuse, psychological abuse, physical abuse and neglect. Causes of elder abuse included institution, employee and client characteristics. It is necessary in residential settings to create preventive policies that will focus on supervision regarding elderly people's rights violation and psychological and physical abuse, as well as on building organizational cultures that will respect ethical principles. (shrink)

Background: Compassion is seen as a core professional value in nursing and as essential in the effort of relieving suffering and promoting well-being in palliative care patients. Despite the advances in modern healthcare systems, there is a growing clinical and scientific concern that the value of compassion in palliative care is being less emphasised. Objective: This study aimed to explore nurses’ experiences of compassion when caring for palliative patients in home nursing care. Design and participants: A secondary qualitative analysis inspired (...) by hermeneutic circling was performed on narrative interviews with 10 registered nurses recruited from municipal home nursing care facilities in Mid-Norway. Ethical considerations: The Norwegian Social Science Data Services granted permission for the study (No. 34299) and the re-use of the data. Findings: The compassionate experience was illuminated by one overarching theme: valuing caring interactions as positive, negative or neutral, which entailed three themes: (1) perceiving the patient’s plea, (2) interpreting feelings and (3) reasoning about accountability and action, with subsequent subthemes. Discussion: In contrast to most studies on compassion, our results highlight that a lack of compassion entails experiences of both negative and neutral content. Conclusion: The phenomenon of neutral caring interactions and lack of compassion demands further explorations from both a patient – and a nurse perspective. (shrink)

To analyze the influence of the integration of piano art and media on long-term care of the elderly in the aging society, and to improve the living standard and happiness of the elderly, based on educational psychology, several scales of self-compiled personal information, the Ackerson personality inventory, and the memorial university of Newfoundland happiness scale were introduced for statement, and questionnaire method was adopted for information collection. Then, the mechanism of the integration of piano art and media on the happiness (...) of the elderly was summarized. The results showed that there were significant differences in the happiness of the elderly in terms of monthly average income, economic pressure, health status, and living conditions. The happiness of the elderly with a monthly income of more than 5,000 yuan was significantly higher than that of the elderly with a monthly income of <3,000 yuan. The happiness of the elderly with low economic pressure was significantly higher than that of the elderly with high economic pressure. The happiness of the elderly with good living conditions was significantly higher than that of the elderly with ordinary living conditions. The happiness score and positive experience of the elderly with learning over 5 years were significantly higher than those with learning <5 years and the non-piano learning group. The total score of happiness in the piano learning group was significantly positively correlated with positive affection and PE, and negatively correlated with neuroticism and psychosis. It is concluded that the piano art learning process based on educational psychology can improve the subjective well-being of the elderly. In addition, the elderly who have been exposed to piano art for a long time are more active in life. Piano art edification is an important factor affecting the psychological well-being of the elderly. The research has a good guiding significance for improving the happiness of the elderly. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Bioethics Inside the BeltwayNHGRI’s Intramural Ethics ExperimentRonald M. Green (bio)Early in 1995, the National Human Genome Research Institute (then known as the National Center for Human Genome Research) began a novel experiment. It established the Office of Genome Ethics in its Division of Intramural Research (DIR). An extramural “ELSI” funding program for research on the ethical, legal, and social implications of the Human Genome Project had been in existence (...) since 1990, and a joint Department of Energy, NIH Working Group to consider larger policy issues raised by the genome project had also been in existence since that date. But the establishment of the Office of Genome Ethics was the first effort to provide an in-house ethics service for the several hundred NHGRI genetic researchers working on the NIH campus.The experiment was also novel by NIH standards. The Clinical Center, which serves all NIH research institutes as a patient-care facility, has long had a bioethics program, but, to my knowledge, none of the 23 other institutes, centers, or divisions of the NIH had ever developed an ethics program to assist its on-campus researchers in identifying and addressing the ethical issues arising from their research. Behind this initiative lay the commitment to ethics in genetic research shared by Francis Collins, Director of NHGRI, Jeff Trent, Scientific Director of the Division of Intramural Research, and other senior scientists and administrators of the Institute.I was fortunate to be asked to serve as Director of this office. My previous experience in the federal context was limited. I had served on many NIH study sections and for a nine-month period had been a member of the Human Embryo Research Panel, but none of this amounted to an “insider’s view” of government bioethics. The preponderance of my bioethics career had transpired in the university and medical school/medical center environment.Because I had to continue to fulfill many Dartmouth commitments, I agreed to serve on an interim and half-time basis (one week in Bethesda; one week at home) for an 18-month period. I was assisted in maintaining this schedule by the appointment of a deputy, Mathew Thomas, a recent bioethics graduate of Duke University, who would serve on a full-time basis and provide continuity for our [End Page 181] work. Our objectives, established in consultation with NHGRI personnel, were to learn which functions would be most useful, to set up a program to provide them, and, eventually, to aid in the process of determining how an office like this might fit into NHGRI’s future.As this 18-month stint draws to a close, I can report that it has been an exhilarating experience. I am grateful for the opportunity to have worked with outstanding scientists in an area of growing importance and interest. I believe we have pioneered in the provision of bioethics education and counsel to a diverse group of genetic researchers. We have helped to “open the doors and windows” of the Genome Institute, facilitating two-way communication between NHGRI researchers and others interested in genetic and ethics. We have assisted with some knotty problems in genetic research while building a base of knowledge about highly specialized issues that is useful to researchers inside and outside NHGRI. What follows is an abbreviated overview and evaluation of our activities during this period.Main ActivitiesWorking with a core of interested supporters from every branch of the DIR, our office quickly established a roster of activities aimed at meeting identified needs. These included: (1) a consult service able to help investigators address urgent problems arising in their research or in the IRB review process; (2) a program of workshops and discussion groups dealing with challenging ethical issues raised by genetic research; (3) a program of public seminars bringing together NHGRI researchers and other clinicians, scientists, and scholars in the greater Washington area who are interested in genetic ethics; (4) a course on science research ethics to be offered to all NHGRI personnel; and (5) an ongoing program of research activities in genetics and ethics designed to provide depth and substance to the office’s work.ConsultationsIn an institute with scores of... (shrink)

Background: With rapidly ageing population worldwide, loneliness among older adults is becoming a global issue. Older migrants are considered being a vulnerable population and ethical issues are often raised in care for elderly. A deeper sense of loneliness, existential loneliness is one aspect of loneliness also described as the ultimate loneliness. Making oneself understood or expressing emotions, have shown to be particularly challenging for older migrants which could lead to experience of existential loneliness. Ageing and being a migrant are potential (...) triggers for experiencing existential loneliness. There appears to be, however, little known about being a migrant experiencing existential loneliness in old age. Aim: This study explored older migrants’ experience of existential loneliness. Research design: Qualitative study. Participants and research context: Data were collected through interviews (n = 15) with older (>65) migrants’ in Swedish nursing homes or senior citizen centres. A thematic analysis was performed to analyse the data. Ethical considerations: The study was conducted in accordance with the principles of research ethics. Findings: The result was described in terms of three themes: (1) Choices made in life, (2) seeking reconciliation with life and (3) thoughts about death and dying in a foreign country. Discussion: Ethical reflection and knowledge about how older migrants’ life story can lead to experiencing existential loneliness, could be of use in care for older migrants’. Conclusion: This study indicates that the experience of existential loneliness derived from being a migrant is a long-term and significant process. Migration was a hope of creating a meaningful life, the experience of existential loneliness occurred as migrants sought reconciliation with life, reflected upon their past choices, and thought about death and dying in a foreign country. (shrink)

Background Few empirical studies have been found that explore ethical challenges among persons in high public positions that are responsible for elder care. The aim of this paper was to illuminate the meaning of being in ethically difficult situations related to elder care as experienced by high level decision-makers. Methods A phenomenological-hermeneutic method was used to analyse the eighteen interviews conducted with political and civil servant high level decision-makers at the municipality and county council level from two counties in Sweden. (...) The participants worked at a planning and control as well as executive level and had both budget and quality of elder care responsibilities. Results Both ethical dilemmas and the meaning of being in ethically difficult situations related to elder care were revealed. No differences were seen between the politicians and the civil servants. The ethical dilemmas mostly concerned dealings with extensive care needs and working with a limited budget. The dilemmas were associated with a lack of good care and a lack of agreement concerning care such as vulnerable patients in inappropriate care settings, weaknesses in medical support, dissimilar focuses between the caring systems, justness in the distribution of care and deficient information. Being in ethically difficult situations was challenging. Associated with them were experiences of being exposed, having to be strategic and living with feelings such as aloneness and loneliness, uncertainty, lack of confirmation, the risk of being threatened or becoming a scapegoat and difficult decision avoidance. Conclusion Our paper provides further insight into the ethical dilemmas and ethical challenges met by high level decision-makers', which is important since the overall responsibility for elder care that is also ethically defensible rests with them. They have power and their decisions affect many stakeholders in elder care. Our results can be used to stimulate discussions between high level decision-makers and health care professionals concerning ways of dealing with ethical issues and the necessity of structures that facilitate dealing with them. Even if the high level decision-makers have learned to live with the ethical challenges that confronted them, it was obvious that they were not free from feelings of uncertainty, frustration and loneliness. Vulnerability was revealed regarding themselves and others. Their feelings of failure indicated that they felt something was at stake for the older adults in elder care and for themselves as well, in that there was the risk that important needs would go unmet. (shrink)

Human death is a mystery. Although scientists have identified the criteria, states, and signs of biological death, undoubtedly the issues of dying and death have a wider meaning. In this book, the authors present current research in the study of the ethical issues, practices and challenges of end-of-life care. Topics discussed include a spiritual perspective of end-of-life experiences; a veterinary oncologist's interprofessional crossover perspective of euthanasia for terminal patients; diabetes and end-of-life care; helping families to cope after the death of (...) a loved one; multidimensional aspects of nursing care for dying patients; spirituality at the end-of-life; challenges of promoting end-of-life care in residential care homes in Hong Kong; and the current situation and challenges of home end-of-life care for the elderly in Japan. (shrink)

We argue that Aged Residential Care (ARC) facilities should be allowed to create and adopt an informed “No Chest Compression” (NCC) policy. Potential residents are informed before admission that staff will not provide chest compressions to a pulseless resident. All residents would receive standard choking care, and a fully discussed advance directive would be utilized to determine if the resident wanted a one-minute trial of rescue breaths (to clear their airway) or utilization of the automatic defibrillator in case of arrest. (...) The benefits of chest compressions for residents in ARC are dubious, and the burdens are high. For frail elderly people without a pulse, chest compressions are arguably unethical because the chance of benefit is minuscule, the procedure is violent, painful, and challenging to perform correctly, and procedures detract from a peaceful end of life. These burdens fall on residents, their families, ARC facilities providers, and society. We further argue that limitations on universal invasive resuscitation, such as advance directives, need to be more consistently sought and applied. The goals of an informed NCC policy are twofold: removing added suffering from a person’s end-of-life experience and increasing ARC residents’ understanding of the burdens of ineffective treatments for pulselessness. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Are We There Yet?A Narrative of Firsthand Interpreter Experiences in the Medical Field and Insights to Aid Language Access ComplianceHilda Sanchez-HerreraMy Spanish interpreting journey began in 2008. In those days, very little training was available, and online studies were very new and rare. Early trainings involved out-of-town interpreter and translation conferences, reading the recently released Culturally and Linguistically Appropriate Services (CLAS) standards documents, and participating in the diversity events (...) at the hospital and in the community. Eventually, I did three different medical interpreter training programs, each teaching me something new and improving my skills. The first few years opened my eyes to what it meant for one to be trained, qualified, and certified. It has been a marvelous learning experience.Now, with sixteen years of experience and the vastness and richness of being an interpreter in various settings, I continue to learn to be flexible, patient, and courageous. I've also learned to be a teacher because clinical staff have one perspective of what interpreting is, and we have another. I've learned to be courageous because the field of Language Access is very demanding and involves encountering a lot of biases and judgmental perspectives. Language Access champions advocate throughout the nation so that those who are working in this field will have better working conditions. Collaborations started in the community, extending into social services, legal, and beyond.Interpreting sessions that had the most impact are many, but a few stand out, including a patient I assisted who had presumed Locked-In Syndrome and a domestic abuse female at a maternal-fetal appointment. I have had to explain to a family what it means to be brain dead and have interpreted for numerous palliative care sessions.The presumed Locked-In syndrome patient was quite the experience. I had recently started working on the floor at the hospital and was making my rounds to Spanish-speaking inpatients. One morning, I arrived just as the physician team was making their rounds. I listened to the briefing: a 42-year-old female had suffered a stroke. She could not speak and could not use her extremities. The team had done what they could and reached the conclusion that she was "locked-in" because she was aware but their neurological exams were inconclusive. I asked if they had used the video or phone interpreting services and they said yes but it was not fruitful. I offered to rule out a language barrier. They agreed.It was then that the patient began making great progress in her recovery. The team was amazed at the patient's reaction. She cried when she heard her language spoken. We established communication via a board and eye signals. Speech therapy came and they were able to assess her ability to speak and swallow. While she remained approximately 6 months in the hospital, it was not until the last two [End Page 154] months that she made great strides, and it was all due to language access. Eventually, she was transferred to another healthcare facility closer to home. I was overjoyed and wondered why they had not had this success earlier. It was later determined that the connections were not good, and the interpreter could not "see" what the patient was doing.The domestic violence female was an emotional one for me. I was scheduled to assist at two of her appointments that morning: one at maternal fetal and the other at ENT. Upon arrival, I greeted her and noticed her eyes were watery and her face seemed a little swollen, but I did not want to make her feel embarrassed, so I remained quiet. I accompanied her to the ENT appointment first. The doctor asked her questions, and she seemed nervous. Still no intervention. We finished and went to the maternal-fetal appointment. On the way to the office, I asked if she was ok. She began to cry and said in a soft tone, looking around, that her partner had hit her on the way to the clinic.I was shocked! I knew that permission was needed to share this information with the providers and that her safety was critical. She thought... (shrink)

PurposeThe purpose of this paper is to explore how surveillance facilitates new power relationships.Design/methodology/approachThis longitudinal qualitative study is predicated on observations of the home care workers interacting with their managers and clients. The emerging picture was complemented with interviews of the participants. The home care workers were chosen as being crucial in the construction of new everyday relationships, and their interpretations were given most value in presenting how surveillance and monitoring relationships are constructed as embedded mundane practices and as emerging (...) from practical needs.FindingsThe paper discusses an implementation and use case of surveillance capable technology in a social home care setting. The findings suggest discrepancy of how surveillance is being interpreted by different participants depending on their positioning in the context of use.Originality/valueThe study presents a case study where surveillance issues emerge not only at the workplace but also in the domestic sphere. The paper explores the workers' role in defining surveillance at the workplace, and questions the limits of legitimate surveillance in the social care context concerning vulnerable citizens as clients. (shrink)

A central feature of experimental development economics is the use of randomized controlled trials (RCTs) to evaluate the effectiveness of prospective socioeconomic interventions. The use of RCTs in development economics raises a host of ethical issues which are just beginning to be explored. In this article, I address one ethical issue in particular: the routine use of the status quo as a control when designing and conducting a development RCT. Drawing on the literature on the principle of standard care in (...) medical research ethics, as well as considerations of distributive justice in non-ideal circumstances, I argue that the practice of using the status quo as a control is ethically justifiable. However, I add an important qualification based on the natural duty of rescue to address the concern that my account is overly permissive. (shrink)

Canada’s population is aging, and seniors constitute the fastest growing demographic in the nation. The chronic health conditions, limited social support, functional decline, and cognitive impairment experienced by seniors may necessitate admission to a personal care home (PCH) setting up until the time of their death. The ethical problems that arise in the care of dying patients are numerous and complicated. The care of dying seniors in PCHs, however, is largely provided by frontline workers such as healthcare aides (HCAs), who (...) usually have little training in palliative care or ethics. Research examining the identification and resolution of ethical problems in care of the dying has been conducted from the perspectives of nurses and physicians in various clinical settings, but the voice of HCAs in PCHs is virtually absent from clinical ethics. Given that the inability to satisfactorily resolve ethical issues in clinical practice is associated with feelings of guilt, powerlessness, avoiding contact with patients, failing to provide good physical care, and increased staff turnover, an empirical examination of HCAs’ experiences of ethically challenging situations is warranted.We conducted a phenomenological study to access the lived experience of HCAs (N=12) working in proprietary and nonproprietary care homes as they encountered situations they deemed ethically challenging in providing end-of-life care to dying seniors. The findings reported here explicate: (1) the types of situations that are ethically problematic for HCAs; (2) the meanings they assign to these situations, and (3) the impact such situations have on the provision of end-of-life care. (shrink)

Background: The increasing number of elderly people in nursing homes with failing competence to give consent represents a great challenge to healthcare staff’s protection of patient autonomy in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation. The lack of national guidelines and internal routines can threaten the protection of patient autonomy. Objectives: To place focus on protecting patient autonomy in the decision-making process by studying how relatives experience their role as substitute decision-makers. Design: A qualitative descriptive design with analysis (...) of the contents of transcribed in-depth interviews with relatives. Participants: Fifteen relatives of 20 patients in 10 nursing homes in Norway. Results and Interpretations: The main findings reveal deficient procedures for including relatives in decision-making processes. Relatives have poor knowledge about the end of life, and there is little discussion about their role as substitute decision-makers for patients who are not competent to give consent. Few relatives understand the concept of patient autonomy. In Norway the treating physician is responsible for patient treatment. When relatives are included in discussions on treatment, they perceive themselves as responsible for the decision, which is a burden for them afterwards. This qualitative study describes relatives’ experiences, thus providing important information on the improvement potential with the main objective of safeguarding patient autonomy and caring for relatives. Conclusion: The study reveals failing procedures and thus a great potential for improvement. Both ethical and legal aspects must be addressed when considering patient autonomy. (shrink)

Proprioception, a sense of bodily position and movement, is rarely the focus of conscious experience. If we are ordinarily conscious of proprioception, we seem only peripherally so. Thus, evidence that proprioception is present in the periphery of at least some conscious experiences seems to be good evidence that conscious experience is fairly rich. Anosognosia for paralysis is a denial of paralysis of one's limbs, usually in the wake of brain damage from stroke. Because anosognosic patients overlook their paralysis, anosognosia seems (...) be a counter-example to the claim that proprioception exists in the periphery of conscious experience. However, careful consideration of the data shows that anosognosia makes a poor counterexample to a rich theory of consciousness. Thus, we retain reason to believe that proprioception exists in the periphery of conscious experience, and so to conclude that conscious experience is relatively rich. (shrink)

Computers are already approving financial transactions, controlling electrical supplies, and driving trains. Soon, service robots will be taking care of the elderly in their homes, and military robots will have their own targeting and firing protocols. Colin Allen and Wendell Wallach argue that as robots take on more and more responsibility, they must be programmed with moral decision-making abilities, for our own safety. Taking a fast paced tour through the latest thinking about philosophical ethics and artificial intelligence, the authors argue (...) that even if full moral agency for machines is a long way off, it is already necessary to start building a kind of functional morality, in which artificial moral agents have some basic ethical sensitivity. But the standard ethical theories don't seem adequate, and more socially engaged and engaging robots will be needed. As the authors show, the quest to build machines that are capable of telling right from wrong has begun. -/- Moral Machines is the first book to examine the challenge of building artificial moral agents, probing deeply into the nature of human decision making and ethics. (shrink)

Examining the ethics of long-term, career involvement by physicians in global health work is vital, given growing professional interest and potential health implications for communities abroad. However, current literature remains heavily focused on ethical considerations of short-term global health training experiences. A literature review informed our development of an ethics framework centered on two perspectives: the practitioner perspective, further subdivided into extrinsic and intrinsic factors, and community perspectives, specifically that of the host community and the physician’s home community. Some physician (...) factors included cultural/linguistic differences, power imbalances, and sustainable skills/competencies. Receiving community factors included resource limitations, standard of care disparities, and community autonomy. Home community factors focused on the opportunity cost of an unavailable physician who was trained and supported by the local community. Descriptive review permitted comparison with existing short-term literature, noting similarities and differences. Our framework provides a basis for further research and critical analysis of ethical implications of career-long physician global health work. (shrink)

The complex emotional work of nurses calls for more recognition of emotional labour and the incorporation of emotional labour in nursing education. Based on participant observation and semistructured interviews, we describe the experiences of student nurses in two nursing homes for elderly people with dementia in the Netherlands. We analyse their interactions using Goffman's dramaturgical view on the front and backstage behaviour and the distinction between surface acting and deep acting. The study reveals the complexity of emotional labour, as nurses (...) swiftly adapt their communication styles and behavioural strategies between settings, patients, and even between moments within one interaction sequence, which shows that the theoretical binaries fail to fully capture their skills. Although student nurses take pride in their emotionally taxing work, the societal undervaluation of the nursing profession negatively impacts their self‐image and ambitions. More explicit recognition of these complexities would enhance their self‐appreciation. This calls for a professional ‘backstage area’ that allows nurses to articulate and strengthen their emotional labour skills. Educational institutions should provide this backstage for nurses‐in‐training to strengthen these skills as part of the professional skill set. (shrink)

Background The COVID-19 pandemic has forced rapid and widespread change to standards of patient care and nursing practice, inevitably leading to unprecedented shifts in the moral conditions of nursing work. Less is known about how these challenges have affected nurses’ capacity to meet their ethical responsibilities and what has helped to sustain their efforts to continue to care. Research objectives 1) To explore nurses’ experiences of striving to fulfill their ethical responsibilities of care during the COVID-19 pandemic and 2) to (...) explore what has fostered nurses’ capacity to fulfill these responsibilities. Research Design A generic qualitative approach was used incorporating concepts coming from fundamental features of care. Participants Twenty-four Canadian Registered Nurses from a variety of practice settings were interviewed. Ethical Considerations After receiving ethics approval, signed informed consent was obtained before participants were interviewed. Findings Four themes were identified. 1) Challenges providing good care in response to sudden changes in practice. 2) Tensions in juggling the responsibility to prevent COVID-19 infections with other competing moral responsibilities. 3) Supports to foster nurses’ capacity to meet their caring responsibilities. 4) The preservation of nurses’ moral identity through expressions of gratitude and health improvement. Discussion Infection control measures and priorities set in response to the pandemic made at distant population and organizational levels impacted nurses who continued to try to meet the ideals of care in close proximity to patients and their families. Despite the challenges that nurses encountered, the care they received themselves enabled them to continue to care for others. Nurses benefited most from the moral communities they had with their colleagues and occasionally nurse leaders, especially when they were supported in a face-to-face manner. Conclusion: Moral community can only be sustained if nurses are afforded the working conditions that make it possible for them to support each other. (shrink)

Home-based service jobs have developed considerably across Western societies. In fact, chances are high that a working-class woman in France today will, at some point in her life, be a house cleaner, home-based child care provider, or home aide for the elderly. Going against political, scholarly, and everyday discourses that, saturated with the double prejudices of gender and class, treat all these home service occupations, which require little prior training, the same, this article illuminates the variability of the forms of (...) subordination experienced by women practicing these occupations in France. Comparing these jobs with the ensemble of low-skill jobs and with each other exposes what is specific to the particular form of subordination each job type entails, in terms of the extent of job supervision and the nature of the home where it is practiced, the presence or absence of relations with coworkers and/or a “public,” and the nature of this “public.” It mobilizes nationwide statistical data in a new way to shift attention to these numerous ordinary work situations, which are much less studied than those of the domestic workers of the wealthiest cities of the Western world. (shrink)

Home care is one of the fastest‐growing industries in the United States, providing valuable opportunities for millions of older adults and people with disabilities to live at home rather than in institutional settings. Home care workers assist clients with essential activities of daily living, but their wages and working conditions generally fail to reflect the importance of their work. Drawing on the work of Eva Feder Kittay and other care ethicists, we argue that good care involves attending to the needs (...) of another out of a concern for their well‐being. Such care should be standard in the home care system. Yet, because of the pervasive racial, gender, and economic inequalities that the home care industry perpetuates, home care workers and their clients cannot reasonably be expected to care about each other. We endorse reforms aimed at enabling home care workers and their clients to form and maintain professional relationships that cultivate care.. (shrink)

Introduction: Broad issues relating to filial piety and ethical dilemmas of families and care practitioners in residential care were discussed as part of an international networking project. It is meaningful to explore the different roles and responsibilities of participants in residential care in the context of China’s filial piety. Older residents and their children are part of this caring process, which might be significantly different from that in Western countries. However, only a little amount of research related to this topic (...) has been conducted. Objective: This study aimed to identify and describe the roles and responsibilities of a nursing professional, manager, older person, and her children, as well as other mutual contacts in residential care, based on the context of Chinese filial piety culture. Methods: The study was conducted as a case study. The product of the analysis, themes, or categories that describe the phenomenon, content analysis method was applied. After a consultation with a group of experts on research on older adults, a specific nursing home was selected in Xiamen City, China. This case study emphasized the roles and responsibilities of a nursing professional, manager, the older resident, and her children as they related to the care of older adult. The data, which consisted of interviews with four participants, were collected using a semi-structured interview method. Inductive content analysis was applied to analyze data. Ethical considerations: Permission to conduct the interviews received ethical approval from the participating organization based on national standards. The elements of voluntary participation, anonymity, and confidentiality on the part of the respondent were explained. Findings: The analysis resulted in four participants, with some variation of roles and responsibilities, describing staffing level and competence and their behavior for reducing the accident of the older adult, and the children of older adult influencing the quality of taking care of the older adult, based on the filial piety. The nursing home residents were described as becoming increasingly complex with a subsequent demand for increased spiritual support. There was variation in roles and responsibilities among four participants, but their contributions adjusting was an overall focus. Manager plays a considerable role in the future development of the institution, as a resource allocator, and decision-maker. Nursing professional is the main personnel serving as a link among staffs. The older adult herself adjust mentally and actively with the aging process, and some of them can be able to burden in taking care of her grandchildren or can be rehired and still have a distinct role in society. Children are required to fulfill their obligations to their parents, which involves supports of care, spiritual and economy. Several factors such as managers and nursing professional competence and their cooperation, various aspects of supports from their children based on the filial piety, and adequate communication and self-adjusting of the older adult, were recognized as factors affecting the process of taking care of the older adult. Discussion: New information was produced to serve as theoretical guidelines in managing nursing homes, the training of nursing staff, preservation of the filial piety culture, and encouraging self-care among older people in the new era. Conclusion: A variety of roles and responsibilities for a nursing professional, manager, MrsWang and her children was identified in the older adult care process. Several factors to manager’s and nursing professional’s experience of the resource situation and competence level, and also adequate communication and self-adjusting of the older adult were suggested to affect the effect of taking care of the older adult. The older adults were perceived as more complex with more physical and mental problems but inadequate care from family members forcing the older adult from home care to a nursing home. A nursing home seems to have a higher nursing competence and be well-suited for the needs of the older adult, on the other hand, filial piety and self-care are also needed to play an important role in taking care of the older adult. (shrink)