The ethical dimension of care work is less explored in Chinese long-term care (LTC) settings. This paper accentuates care ethics embodied by direct care workers (DCWs) from an ethnographic study of care at Sunlight Nursing Home in central China. I include the notion of xiao (filial piety) to construe care ethics by engaging both feminist and intersectional approaches. Empirical findings highlight the narrative of mei banfa (‘there is nothing you can do about (...) it’) in revealing the complexity of caregiving in a commercialised environment where both physical and emotional care intertwine. Mei banfa compels DCWs to invoke their agency in care practice despite inadequate support from the nursing home and negative social portrayals of care work. It is a cognitive coping strategy of DCWs to harness their energy in upholding care ethics for both the elderly residents and their own family members. Such commitment is unlikely to be sustained if structural barriers continue to impede the recognition of care labour as part of social production. Arguably, an ethically informed approach to both policymaking and care practice gives voice to human interdependency in care work and affords ways to reimagine a caring future. (shrink)

Ongoing changes in many Western countries have resulted in more healthcare services being transferred to municipalities and taking place in patients’ homes. This greatly impacts nurses’ work in home care, making their work increasingly diverse and demanding. In this study, we explore home‐care nursing through a critical discourse analysis of focus group interviews with home‐care nurses. Drawing on insights from positioning theory, we discuss the content and delineation of their work and the interweaving (...) of contextual changes. Nurses hold a crucial position in home healthcare, particularly in ensuring care for sicker patients with complex needs. Assessing health needs, performing advanced care, and at the same time, providing customized solutions in various homes were identified as distinctive for home‐care nurses’ work. Changes have made nurses’ work become driven by comprehensive tasks and acute medical needs that require much of their competence and time. Urgent care seems to take precedence in nurses’ work, leaving less time and attention for other tasks such as conversations and support for coping with everyday life. This underlines the need to investigate and discuss the content and scope of nurses’ work to help shape the further development of home‐care nursing. (shrink)

Internationally, primary health care has in recent years gained a more central position in political priorities to ensure sustainable health care for the population. Thus, more people receive health care locally and in their own homes, where home‐care nursing plays a large role. In this article, we investigate how home‐care nursing is articulated and made visible in contemporary Norwegian policy documents. The study is a Fairclough‐inspired critical discourse analysis seeking to uncover (...) the position of nursing in the prevailing political ideologies on current primary health care. In the documents, we identified several complementary and conflicting understandings about home‐care nursing. Home‐care nursing is presented as a basic part of a municipality's health services, but at the same time, its content and contribution are unclear and almost invisible. We argue that the absence of nursing leads to significant perspectives being left out and tie this to the fact that some patient groups and tasks seem to be disadvantaged. The political placement of home‐care nursing in the health‐care landscape is thus not just about nursing as a professional practice but also concerns fundamental care values in our society in relation to disadvantaged groups and work tasks. (shrink)

This study seeks to understand, in the context of intersectional theory, the roles of family members in nursing home care. The unique social locus at which each person sits is the result of the intersection of gender, status, ethnicity and class; it is situational, shifting with the context of every encounter. A content analysis of 15 qualitative interviews with relatives of nursing home residents in Sweden was used to gain a perspective on the relationships between (...) relatives and residents, relatives and the nursing home as an institution, and relatives and the nursing home staff. We sought to understand these relationships in terms of gendered notions of the family and the residents, which are handed down from generation to generation and thus condition who and how relatives should be involved in care, and the ways in which relationships change as care moves from home to nursing home. It requires knowledge and awareness that the nursing home culture is based on intersectional power structures in order for relatives to be involved in nursing home care in alternative and individual ways. (shrink)

Background A team-based approach has been advocated for advance care planning in nursing homes. While nurses are often put forward to take the lead, it is not clear to what extent other professions could be involved as well. Objectives To examine to what extent engagement in advance care planning practices, knowledge and self-efficacy differ between nurses, care assistants and allied care staff in nursing homes. Design Survey study. Participants/setting The study involved a purposive sample (...) of 14 nursing homes in Flanders, Belgium. Nurses, care assistants and allied care staff completed a survey. Ethical considerations The study was approved by the University Hospital of Brussels, as part of a cluster randomized controlled trial. Results One hundred ninety-six nurses, 319 care assistants and 169 allied staff participated. After adjusting for confounders, nurses were significantly more likely than care assistants to have carried out advance care planning conversations and documented advance care planning ; differences not found between allied staff and care assistants. Advance care planning knowledge total scores differed significantly, with nurses ; 95% confidence interval 0.08–0.17; p < 0.001) and allied staff scoring higher than care assistants. We found no significant differences regarding self-efficacy. Discussion While nursing home nurses conducted more advance care planning conversations and documentation than allied care staff and care assistants, these two professional groups may be a valuable support to nurses in conducting advance care planning, if provided with additional training. Conclusions Allied care staff and care assistants, if trained appropriately, can be involved more strongly in advance care planning to enhance relational and individual autonomy of nursing home residents, alongside nurses. Future research to improve and implement advance care planning should consider this finding at the intervention development stage. (shrink)

This article examines the involvement of residents and their relatives in end-of-life decisions and care in Norwegian nursing homes. It also explores challenges in these staff—family relationships. The article is based on a nationwide survey examining Norwegian nursing homes’ end-of-life care at ward level. Only a minority of the participant Norwegian nursing home wards ‘usually’ explore residents’ preferences for care and treatment at the end of their life, and few have written procedures on (...) the involvement of family caregivers when their relative is in the terminal phase. According to the respondents, most staff seem to comfort relatives well. However, several challenges were described. The study revealed a need for better procedures in the involvement of residents and relatives in nursing home end-of-life care. The findings emphasize a need to strengthen both the involvement of nursing home physicians and staff communication skills. (shrink)

Background: Older, frail patients with multimorbidity are at an especially high risk for disease severity and death from COVID-19. The social restrictions proved challenging for the residents, their relatives, and the care staff. While these restrictions clearly impacted daily life in Norwegian nursing homes, knowledge about how the pandemic influenced nursing practice is sparse. Aim: The aim of the study was to illuminate ethical difficult situations experienced by Norwegian nurses working in nursing homes during the COVID-19 (...) pandemic. Research design and participants: The research design involved semistructured individual interviews conducted with 15 nurses working in 8 nursing homes in 3 health regions in Norway, within both urban and rural areas. Ethical considerations: Oral and written information about the study was provided before the participants gave their written consent. The transcribed interviews were de-identified. The study was approved by the Norwegian Centre for Research Data. Findings: Four ethical difficult situations were identified: (a) turning the nursing home into a prison; (b) using medication to maintain peace and order; (c) being left alone with the responsibility; and (d) s. impact on decision-making. Conclusions: The nurses’ ethical challenges were intertwined with external factors, such as national and local guidelines, and the nurses’ own internalized factors, which were connected to their subjective professionality. This duality inflicted emotional distress and gave nurses few opportunities to perform nursing in a professionally sound and safe manner. (shrink)

This study aimed to identify the ethical issues faced by home care physicians and nurses, and the support they require. It was conducted in collaboration with the Japanese Association for Home Care Medicine from November to December 2020. An e-mail was sent to 2785 physicians and 582 nurses who are members of the society, requesting their participation in a web-based survey targeting physicians and nurses with practical experience in home care; 152 physicians and 53 (...) nurses responded. Home care physicians and nurses face ethical issues, some of which are that “the patient’s wishes cannot be reliably understood owing to their impaired decision-making capacity” and “there is disagreement between the patient and their family members over the necessary healthcare.” The respondents sought “experience with, and insight into, healthcare ethics” and “home care” from people with whom they would consult on ethical issues, but at the time of the actual consultation, those individuals were the main healthcare professionals involved with the patient. In addition, the respondents desired to have “multidisciplinary discussions in the community,” “participation of healthcare ethics experts at meetings,” and “meetings held by healthcare ethics experts” to discuss specific cases. Given these results and the history of healthcare ethics education in Japan—which has been implemented mostly for healthcare providers—we conclude that it is important for academic societies that offer healthcare ethics education to healthcare providers and regional core hospitals with ethics support resources to collaborate to provide ethics consultation services in the community. (shrink)

Background: Over the last decade, new healthcare policies are transforming healthcare practices towards independent living and self-care of older people and people with a chronic disease or disability within the community. For professional caregivers in home care, such as nurses, this requires a shift from a caring attitude towards the promotion of patient autonomy. Aim: To explore how nurses in home care deal with the transformation towards fostering patient autonomy and self-care. Research design and (...) context: A case study was conducted in a professional development course for home care nurses, including participant observations and focus groups. The theoretical notion of ‘relational agency’ and the moral concept of ‘practices of responsibility’ were used to conduct a narrative analysis on the nurses’ stories about autonomy. Participants: Eight nurses, two coaches and two university lecturers who participated in the learning circle. Ethical considerations: Informed consent was sought at the start of the course and again, at specific moments during the course of the learning circle. Findings: Three main themes were found that expressed the moral demands experienced and negotiated by the nurses: adapting to the person, activating patients’ strengths and collaboration with patients and informal caregivers. Discussion: On a policy and organisational level, the moral discourse on patient autonomy gets intertwined with the instrumental discourse on healthcare budget savings. This is manifested in the ambiguities the nurses face in fostering patient autonomy in their daily home care practice. To support nurses, critical thinking, moral sensitivity and trans-professional working should be part of their professional development. Conclusion: The turn towards autonomy in healthcare raises moral questions about responsibilities for care. Promoting patient autonomy should be a collaborative endeavour and deliberation of patients, professional and informal caregivers together. (shrink)

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

Background Family involvement in nursing homes is generally recognized as highly valuable for residents, staff and family members. However, family involvement continues to be challenging in practice. Aim To contribute to the dialogue about family involvement and develop strategies to improve family involvement in the nursing home. Methods This interpretative synthesis consists of a thematic analysis and care ethical interpretation of issues regarding family involvement from the perspective of families in nursing homes reported in literature. (...) Findings This study reveals the complexities of family involvement in the nursing home by drawing attention to the moral dimension of the issues experienced by families, as seen through the theoretical lens of Baier’s care ethical concept of trust as a theoretical lens. The synthesis of literature resulted in a thematic categorization of issues reported by families, namely, family–staff relationship, psychosocial factors and organizational circumstances. The care ethical interpretation of the synthesis of literature showed that the concept of trust resonates with all reported issues. Trust evolves over time. Early issues are mostly related to getting to know each other. Secondly, families want to experience that staff are competent and of good will. Difficult feelings families may have, such as guilt or loneliness, and dealing with the deterioration of the loved one puts families in a vulnerable position. This power imbalance between family and staff impedes a trusting relationship. Issues related to organizational circumstances, such as understaffing, also undermine families' trust in staff and the nursing home. Discussion and conclusion Baier’s theoretical concept of trust provides a deeper insight into the moral dimension of family involvement from the perspective of families in the nursing home. To improve family involvement in practice, we propose to aim future interventions at reinforcing trust in the relationship between family and staff as well as in the organizational context in which these care relationships occur. (shrink)

Background Nurses frequently face situations in their daily practice that are ethically difficult to handle and can lead to moral distress. Objective This study aimed to explore the phenomenon of moral distress and describe its work-related predictors and individual consequences for home-care nurses in Germany. Research design A cross-sectional design was employed. The moral distress scale and the COPSOQ III-questionnaire were used within the framework of an online survey conducted among home-care nurses in Germany. Frequency analyses, (...) multiple linear and logistic regressions, and Rasch analyses were performed. Participants and research context The invitation to participate was sent to every German home-care service ( n = 16,608). Ethical considerations The study was approved by the Data Protection Office and Ethics Committee of the German Federal Institute for Occupational Safety and Health. Results A total of 976 home-care nurses participated in this study. Job characteristics, such as high emotional demands, frequent work-life-conflicts, low influence at work, and low social support, were associated with higher disturbance caused by moral distress in home-care nurses. Organizational characteristics of home-care services, such as time margin with patients, predicted moral distress. High disturbance levels due to moral distress predicted higher burnout, worse state of health, and the intention to leave the job and the profession, but did not predict sickness absence. Conclusions To prevent home-care nurses from experiencing severe consequences of moral distress, adequate interventions should be developed. Home-care services ought to consider family friendly shifts, provide social support, such as opportunities for exchange within the team, and facilitate coping with emotional demands. Sufficient time for patient care must be scheduled and short-term takeover of unknown tours should be prevented. There is a need to develop and evaluate additional interventions aimed at reducing moral distress, specifically in the home-care nursing sector. (shrink)

ZusammenfassungDerzeit gibt es in Österreich kein in allen Bundesländern einheitlich etabliertes Betreuungsmodell eines „Heimarztes“ für Pflegeheime. Im Bundesland Wien werden seit mehr als 100 Jahren chronisch Kranke und hochgradig pflegebedürftige Menschen in den städtischen Pflegeeinrichtungen und in einigen Institutionen geistlicher Träger rund um die Uhr von angestellten geriatrisch versierten ÄrztInnen betreut. Die Rechtsform dieser Häuser entspricht prinzipiell der einer „Pflegeanstalt für Chronisch Kranke“ nach dem Österreichischen Krankenanstaltengesetz. Aber auch andere Träger in Wien und Niederösterreich beschäftigen angestellte ÄrztInnen an Bettenstationen von (...) Pflege- und Wohnheimen. Der Bedarf nach einer kontinuierlichen, fachlich spezialisierten ärztlichen Betreuung ergibt sich vor allem aus der Notwendigkeit der Therapie psychiatrischer Erkrankungen im hohen Alter mit Psychopharmaka, der komplexen Multimorbidität und Polypharmazie, sowie aus dem Bedarf nach rehabilitativen Maßnahmen bzw. palliativer Begleitung am Lebensende. Mit dieser Aufgabenstellung sind geriatrisch nicht adäquat ausgebildete bzw. nicht in den Pflegeheimen integrierte ÄrztInnen häufig überfordert. Die Konsequenzen davon sind häufige Spitalseinweisungen bzw. suboptimale ärztliche Betreuung. Als notwendige Maßnahmen zur Qualitätssicherung in geriatrischen Pflegeeinrichtungen ist daher bundesweit die Implementierung von qualifizierten HeimärztInnen nach niederländischem Vorbild zu fordern. (shrink)

The difficulties faced in the recruitment and retention of nursing staff in nursing homes for older people are an international challenge. It is therefore essential that the causes of nurses’ reluctance to work in these settings are determined. This paper considers the influence that multiple‐source care funding issues have on nursing home nurses’ experiences and views regarding the practice and appeal of the role. The methodology for this study was hermeneutic phenomenology. Thirteen nurses from seven (...) nursing homes in the North East of England were interviewed in a sequence of up to five interviews and data were analysed using a literary analysis method. Findings indicate that participants are uncomfortable with the business aspects that funding issues bring to their role. The primary difficulties faced are: tensions between care issues and funding issues; challenges associated with ‘selling beds’; and coping with self‐funding residents’ changing expectations of care. The findings of the study suggest that multiple‐source care funding systems that operate in nursing homes for older people pose challenges to nursing home nurses. Some of these challenges may impact on their recruitment and retention. (shrink)

Patients in nursing homes sometimes give accounts of episodes in which they feel their autonomy and/or self-respect are violated as a result of the care they receive from nursing staff. In these ethically difficult care situations nurses use strategies such as negotiation, explanation and, in some cases, restraint. This study investigates how nurses apply these strategies to resolve ethical dilemmas in such a way that patients experience respect rather than violation. Critical issues that will be discussed (...) include the definition of ethically difficult care situations in nursing homes and the identification of strategies for resolving such situations. Examples of the use of three strategies are presented. The use of negotiation, restraint and explanation are discussed in order to ensure respect for patients’ autonomy and thus to optimize health care outcomes. (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)

Specifying the moral demands of respect for the autonomy of people with dementia (PWD) in nursing homes (NHs) remains a challenging conceptual task. These challenges arise primarily because received notions of autonomous decision-making and informed consent do not straightforwardly apply to PWD in NHs. In this paper, I investigate whether, and to what extent, the influential account of autonomous decision-making and informed consent proposed by Beauchamp and Childress has applicability and relevance to PWD in NHs. Despite its otherwise practical (...) orientation and suitability for acute care settings, I identify three problems with this account when applied to PWD in NHs. These problems include (1) intentionality as an all-or-nothing condition of autonomous decision-making, (2) construing consent as one-off authorization, and (3) unresolved ambiguities around the primacy of precedent autonomy over best interest considerations. To address these problems, I propose and defend a number of revisions to Beauchamp and Childress’s account. First, I suggest that we consider intentionality as a non-binary criterion of autonomous decision-making. Second, I argue for a model of process consent to overcome the moral inadequacy of construing consent as one-off authorization in NHs. And, to overcome the third problem, I suggest accounting for both precedent and extant autonomy of PWD, considering mandates of precedent autonomy not as prescriptive but as informative, and drawing a less rigid distinction between autonomy considerations and best interest judgements. I conclude that this revised version of Beauchamp and Childress’s account fares better than the original version in capturing relevant autonomy considerations to care for PWD in NHs. (shrink)

Interpretations of family carer empowerment in much nursing research, and in home‐care practice and policy, rarely attend explicitly to families’ choice or control about the nature, extent or length of their involvement, or control over the impact on their own health. In this article, structural empowerment is used as an analytic lens to examine home‐care nurses’ interactions with families in one Western Canadian region. Data were collected from 75 hrs of fieldwork in 59 interactions (18 (...) nurses visiting 16 families) and interviews with 12 nurses and 11 family carers. Generally, nurses prioritized client empowerment, and their practice with families appeared oriented to supporting their role and needs as carers (i.e. rather than as unique individuals beyond the caring role), and reinforcing the caring role through validation and recognition. Although families generally expressed appreciation for these interactions, a structural empowerment lens illustrates how the broad context of home care shapes the interpretation and practice of empowerment in ways that can, paradoxically, be disempowering for families. Opportunities to effectively support family choice and control when a client is being cared for at home are discussed. (shrink)

Background:Palliative care is acknowledged as an appropriate approach to support older people in nursing homes. Ethical issues arise from many aspects of palliative care provision in nursing homes; however, they have not been investigated in this context.Aim:To explore the ethical issues associated with palliative care in nursing homes in the United Kingdom.Design:Exploratory, sequential, mixed-methods design.Methods:Semi-structured interviews with 13 registered nurses and 10 healthcare assistants (HCAs) working in 13 nursing homes in the United Kingdom (...) were used to explore ethical issues in palliative care. The ‘Ethical Issues in Palliative Care for Nursing Homes’ instrument was used to measure the frequency and level of distress arising from ethical issues through a cross-sectional survey with 69 registered nurses and 129 healthcare assistants. Data collection occurred between December 2014 and November 2015.Ethical considerations:Ethical approval was granted by Queen’s University’s School of Nursing and Midwifery Research Ethics Committee and governance sought from each nursing home’s manager.Findings:The interviews revealed three themes: ethical issues in practice; relational issues; and organisational issues. No significant differences between registered nurses and healthcare assistants were evident, confirming the patterns emerging from the interviews. Relational issues, primarily issues with residents and families, occurred most frequently and caused greater distress.Conclusion:The shared environment is key in the experience of ethical issues; therefore, multidisciplinary education is needed for ethical decision making in palliative care. Addressing staff knowledge and service organisation may reduce ethical issues locally and provide a benchmark for global change. (shrink)

This paper applies a relational and familial ethic to address concerns relating to nursing home deaths and advance care planning during Covid‐19 and beyond. The deaths of our elderly in nursing homes during this pandemic have been made more complicated by the restriction of visitors even at the end of life, a time when families would normally be present. While we must be vigilant about preventing unnecessary deaths caused by coronavirus outbreaks in nursing homes, some (...) deaths of our elders are inevitable. Thus, it is essential that advanced care planning occurs in a way that upholds the familial and relational aspects of elders’ lives that often matter to them the most. We invoke concepts from feminist ethicists like Hilde Lindemann and Eva Kittay and introduce Avery Weisman and Thomas Hackett’s concept of “appropriate death” to suggest better ways of planning for those deaths of our elderly that cannot be avoided. Our hope is to allow for deaths that are as meaningful as possible for both the elderly and the family members who survive them. (shrink)

The patient’s home is a common setting for palliative care. This means that we need to understand current palliative care philosophy and how its goals can be realized in home‐care nursing encounters (HCNEs) between the nurse, patient and patient’s relatives. The existing research on this topic describes both a negative and a positive perspective. There has, however, been a reliance on interview and descriptive methods in this context. The aim of this study was to (...) explore planned HCNEs in palliative care. The design was a multiple case study based on observations. The analysis includes a descriptive and an explanation building phase. The results show that planned palliative HCNEs can be described as a process of co‐creating possibilities for the patient to reach vital goals through shared knowledge in a warm and caring atmosphere, based on good caring relations. However, in some HCNEs, co‐creation did not occur: Wishes and needs were discouraged or made impossible and vital goals were not reached for the patients or their relatives. Further research is needed to understand why. The co‐creative process presented in this article can be seen as a concretization of the palliative care ideal of working with a person‐centered approach. (shrink)

This article contributes to carework scholarship by examining the nexus of gender, class, and race in long-term care facilities. We draw out a family ideology at work that promotes good care of residents and thus benefits nursing homes. We also found that careworkers value fictive kin relationships with residents, yet we uncover how the family model may be used to exploit these low-income careworkers. Reflecting a subordinate and racialized version of being “part of the family,” we call (...) for an ethic of reciprocity and for concrete change toward valuing equally the humanity of those who need and those who give care. (shrink)

BackgroundAs part of the research project “End-of-life Communication in Nursing Homes. Patient Preferences and Participation”, we have studied how Advance Care Planning is carried out in eight Norwegian nursing homes. The concept of ACP is a process for improving patient autonomy and communication in the context of progressive illness, anticipated deterioration and end-of-life care. While an individualistic autonomy based attitude is at the fore in most studies on ACP, there is a lack of empirical studies on (...) how family members’ participation and involvement in ACP- conversations may promote nursing home patients’ participation in decisions on future treatment and end-of-life care. Based on empirical data and family ethics perspectives, the purpose of this study is to add insights to the complexity of ACP-conversations and illuminate how a family ethics perspective may improve the quality of the ACP and promote nursing home patients’ participation in advance care planning.MethodsParticipant observations of ACP-conversations in eight nursing homes. The observations were followed by interviews with patients and relatives together on how they experienced being part of the conversation, and expressing their views on future medical treatment, hospitalization and end-of-life issues.ResultsWe found that the way nursing home patients and relatives are connected and related to each other, constitutes an intertwined unit. Further, we found that relatives’ involvement and participation in ACP- conversations is significant to uncover, and give the nursing home staff insight into, what is important in the nursing home patient’s life at the time. The third analytical theme is patients’ and relatives’ shared experiences of the dying and death of others. Drawing on past experiences can be a way of introducing or talking about death.ConclusionsAn individual autonomy approach in advance care planning should be complemented with a family ethics approach. To be open to family ethics when planning for the patient’s future in the nursing home is to be open to diversity and nuances and to the significance of the patient’s former life and experiences. (shrink)

In this paper, we argue that ‘good care’ in residential nursing homes is enacted through different care practices that are either inspired by a ‘professional logic of care’ that aims for justice and non-maleficence in the professional treatment of residents, or by a ‘relational logic of care’, which attends to the relational quality and the meaning of interpersonal connectedness in people’s lives. Rather than favoring one care logic over the other, this paper indicates how (...) important aspects of care are constantly negotiated between different care practices. Based on the intricate everyday negotiations observed during an ethnographic field study at an elderly nursing home in Germany, the paper puts forth the argument that care is always a matter of tinkering with different, sometimes competing ‘goods’. This tinkering process, which unfolds through ‘intuitive deliberation’, ‘situated assessment’ and ‘affective juggling’ is then theorized along the conceptualization of a ‘practical ethics of care’: an ethics which makes no a priori judgments of what may be considered as good or bad care, but instead calls for momentary judgments that are pliable across changing situations. (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)

Background: Ought nursing homes to establish clinical ethics committees? An answer to this question must begin with an understanding of how a clinical ethics committee might be beneficial in a nursing home context – to patients, next of kin, professionals, managers, and the institution. With the present article, we aim to contribute to such an understanding. Aim: We ask, in which ways can clinical ethics committees be helpful to stakeholders in a nursing home context? We (...) describe in depth a clinical ethics committee case consultation deemed successful by stakeholders, then reflect on how it was helpful. Research design: Case study using the clinical ethics committee’s written case report and self-evaluation form, and two research interviews, as data. Participants and research context: The nursing home’s ward manager and the patient’s son participated in research interviews. Ethical considerations: Data were collected as part of an implementation study. Clinical ethics committee members and interviewed stakeholders consented to study participation, and also gave specific approval for the publication of the present article. Findings/results: Six different roles played by the clinical ethics committee in the case consultation are described: analyst, advisor, support, moderator, builder of consensus and trust, and disseminator. Discussion: The case study indicates that clinical ethics committees might sometimes be of help to stakeholders in moral challenges in nursing homes. Conclusions: Demanding moral challenges arise in the nursing home setting. More research is needed to examine whether clinical ethics committees might be suitable as ethics support structures in nursing homes and community care. (shrink)

BackgroundThe Liverpool Care Pathway is an interdisciplinary protocol, aiming to ensure that dying patients receive dignified and individualized treatment and care at the end-of-life. LCP was originally developed in 1997 in the United Kingdom from a model of cancer care successfully established in hospices. It has since been introduced in many countries, including Norway. The method was withdrawn in the UK in 2013. This review investigates whether LCP has been adapted and validated for use in nursing (...) homes and for dying people with dementia.MethodsThis systematic review is based on a systematic literature search of MEDLINE, CINAHL, EMBASE, and Web of Science.ResultsThe search identified 12 studies, but none describing an evidence-based adaption of LCP to nursing home patients and people with dementia. No studies described the LCP implementation procedure, including strategies for discontinuation of medications, procedures for nutrition and hydration, or the testing of such procedures in nursing homes. No effect studies addressing the assessment and treatment of pain and symptoms that include dying nursing home patients and people with dementia are available.ConclusionLCP has not been adapted to nursing home patients and people with dementia. Current evidence, i.e. studies investigating the validity and reliability in clinically relevant settings, is too limited for the LCP procedure to be recommended for the population at hand. There is a need to develop good practice in palliative medicine, Advance Care Planning, and disease-specific recommendations for people with dementia. (shrink)

Book reviewed in this article: Unloving Care: The Nursing Home Tragedy. By Brace C. Vladeck.

BackgroundEthically challenging critical events and decisions are common in nursing homes. This paper presents nursing home doctors’ descriptions of how they include the patient and next of kin in end-of-life decisions.MethodsWe performed ten focus groups with 30 nursing home doctors. Advance care planning; aspects of decisions on life-prolonging treatment, and conflict with next of kin were subject to in-depth analysis and condensation.ResultsThe doctors described large variations in attitudes and practices in all aspects of end-of-life (...) decisions. In conflict situations, many doctors were more concerned about the opinion of next of kin than ensuring the patient’s best interest.ConclusionsMany end-of-life decisions appear arbitrary or influenced by factors independent of the individual patient’s values and interests and are not based on systematic ethical reflections. To protect patient autonomy in nursing homes, stronger emphasis on legal and ethical knowledge among nursing home doctors is needed. (shrink)

ZusammenfassungDer Einsatz von Psychopharmaka im Altenpflegeheim unterliegt aufgrund institutioneller und struktureller Besonderheiten dieses Versorgungsbereiches, aber auch aufgrund der großen Abhängigkeit und Vulnerabilität eines großen Teils der Altenpflegeheimbewohner in besonderer Weise der Gefahr, in inadäquater und missbräuchlicher Weise durchgeführt zu werden. Die Beachtung der ethischen Grundprinzipien des Wohltuns und des Nichtschadendürfens sowie des Respekts vor der Autonomie der Bewohner sollte für alle an der Versorgung unmittelbar und mittelbar Beteiligten handlungsleitend sein. Zum Schutz der Heimbewohner, aber auch mit dem Ziel die Versorgungsqualität (...) in diesem Bereich nachprüfbar zu verbessern, werden in diesem Beitrag Kriterien zur Definition einer inadäquaten bzw. adäquaten Anwendung von Psychopharmaka explizit formuliert, sowie deren Implementierung in prozessorientierte Handlungsalgorithmen und Behandlungsleitlinien vorgeschlagen. Darüber hinaus sollen die Möglichkeiten und Grenzen nicht-pharmakologischer, psychologischer Interventionen als Alternative zur Psychopharmakamedikation diskutiert und hinsichtlich ihrer ethischen Implikationen reflektiert werden. (shrink)

Twenty-five long-term care nurses in eight nursing homes in central Kentucky were inter viewed concerning ways in which they might assist elderly residents to preserve and enhance their personal autonomy. Data from the interviews were analysed using grounded theory methodology. Seven specific categories of assisting were discovered and described: personalizing, informing, persuading, shaping instrumental circumstances, considering, mentioning opportunities, and assessing causes of an impaired capacity for decision-making. The ethical implications of these categories of assisting for clinical prac tice (...) are examined. Although nurses recognized the importance of resident autonomy, the majority of them failed consistently to employ the categories of assistance to foster resi dent self-determination and most of them held an inadequate understanding of the con cepts of consent and decisional capacity. To assure confidentiality, pseudonyms are used in the following cases and discussions for all names of nurses, residents and facilities. (shrink)

Technology and its interfaces with nursing care, patients and carers, and the home are many and varied. To date, healthcare services research has generally focussed on pragmatic issues such access to and the optimization of technology, while philosophical inquiry has tended to focus on the ethics of how technology makes the home more hospital like. However, the ethical implications of the ways in which technology shapes the subjectivities of patients and carers have not been explored. In (...) order to explore this, poststructural theory, in particular the work of Butler, Foucault, and Deleuze, is used to theorize the relationship between subjectivity and materiality as ethically mandated on producing rather than precluding the development of subjectivities in novel ways. This theoretical understanding is then utilized through a process of ‘plugged in’ as described by Jackson and Massie that aims to link empirical data, research, and philosophical inquiry. Through this process, it is suggested that power, which the empirical data demonstrate, is frequently exercised through medical discourses and restricts patients' and carers' ability to shape the material environment of the home as a place to live and be cared for in palliative stages of illness. Alternative discourses are suggested both from the empirical data as well as other research, which may offer patients and carers the possibility of reclaiming power over the home and their subjectivities. Finally, the dichotomy between the home and hospital, mediated via technology, is posited as being problematic. It is argued the dichotomy is false and should be moved away from in order to allow an ethical embrace of technology in palliative care. (shrink)

Background: Worldwide, older persons lack access to palliative care. In Sweden, many older persons die in nursing homes where care is provided foremost by assistant nurses. Due to a lack of beds, admission is seldom granted until the older persons have complex care needs and are already in a palliative phase when they move in. Objective: To describe assistant nurses’ perspectives of providing care to older persons at the end of life in a nursing (...) home. Research design: Data were collected in semi-structured individual interviews and analyzed with inductive qualitative content analysis. Participants and research context: Seven assistant nurses from a nursing home in Sweden were randomly selected. Ethical consideration: The research was approved by the local ethics committee. Results: Three main categories emerged; “Death a natural part of life”; “The older person’s well-being”; and “Care in the moment of death”; and seven sub-categories. The assistant nurses described themselves as knowing the older persons well enough to provide good end-of-life care. This was achieved by making small-talk while providing daily care. Relying on experience-based knowledge, they strove to provide end-of-life care built upon respect and engagement with the ambition to strengthen older persons’ dignity, for example, by lowering the tempo of care at the end of life, in spite of organizational restrictions. Discussion: The assistant nurses offered attentive end-of-life care, focusing upon bodily care. The existential needs of the older persons were not foregrounded. Conclusion: To develop their work, and to promote an ethical foundation for such care, assistant nurses might need support and education to be able to offer a care more in line with the aims of palliative care. Furthermore, the organization of care needs to promote, not impede, the realization of this development. (shrink)

Understanding how a nurse acts in a particular situation reveals how nurses enact their ethics in day-to-day nursing. Our ethical frameworks assist us when we experience serious ethical dilemmas. Yet how a nurse responds in situations of daily practice is contingent upon all the presenting cues that build the current moment. In this article, we look at how a home care nurse responds to the ethical opening that arises when the nurse enters a person’s home. We (...) discuss how the home presents the nurse with knowledge that informs the provision of ethical nursing care. The analysis is based on findings from an interpretive research study in palliative home care in Canada. Through interpretive analysis of a nursing situation we delineate how the nurse engages with the whole and acts inside the moment. The analysis shows how home care nurses are ethically determined to engage with whatever is going on in a patient’s home. (shrink)

Our 2021 article, "Dying Well in Nursing Homes During COVID-19 and Beyond: The Need for a Relational and Familial Ethic," addresses the response to the COVID-19 pandemic within nursing homes and the impact it had on the lives of residents, care providers, and families. We acknowledge that, at the height of the pandemic, when infection and death rates were soaring in these facilities, extreme "lockdown" measures may have been justified; but these measures resulted in significant relational costs. (...) The collateral damage caused by these lockdown measures included extreme isolation, loss of community, and experiences of confusion, depression, and mental decline for the elderly residents that... (shrink)

Respect for autonomy is well known as a core element of normative views on good care. Most often it is interpreted in a liberal way, with a focus on independence and self-determination. In this article we argue that this interpretation is too narrow in the context of care in nursing homes. With the aim of developing an alternative view on respect for autonomy in this setting we described four interpretations and investigated the moral intuitions (i.e. moral judgements) (...) of caregivers regarding these approaches. We found that these caregivers seemed to value different notions relating to respect for autonomy under different circumstances. There was no significant difference in moral judgements between men and women or between doctors and nurses. We conclude that a multidimensional understanding of this principle would best fit this context. We end this article with a description of a modest theory of respect for autonomy in nursing homes. (shrink)

Certified nursing assistants (CNAs) provide the majority of direct care to nursing home residents in the United States and, therefore, are keys to ensuring optimal health outcomes for this frail older adult population. These diverse direct care workers, however, are often not recognized for their important contributions to older adult care and are subjected to poor working conditions. It is probable that social‐based discrimination lies at the core of poor treatment toward CNAs. This review (...) uses perspectives from critical social theory to explore the phenomenon of social‐based discrimination toward CNAs that may originate from social order, power, and culture. Understanding manifestations of social‐based discrimination in nursing homes is critical to creating solutions for severe disparity problems among perceived lower‐class workers and subsequently improving resident care delivery. (shrink)

The purpose of this study was to explore and interpret the meaning of relatives’ experiences of encounters with nurses when visiting residents in nursing homes. Thirteen relatives of residents in three nursing homes in Sweden were interviewed. The interviews were tape‐recorded and transcribed verbatim. The method used was hermeneutical text analysis. Four themes emerged in the analysis and interpretation of the whole text: ‘being paid attention to’, ‘being ignored’, ‘being involved’ and ‘being safe and secure’. A further interpretation (...) of the findings shows a deeper understanding of the meaning of relatives. This meaning was revealed as being invited into an encounter with nurses and gave a sense of community but the opposite was being ignored and left outside. This study gives a deeper understanding of the meaning of encounters between relatives and nurses in nursing homes; it also illuminates how these encounters also can affect the care of the residents. This new understanding can hopefully offer support for nurses during their encounters with relatives and optimise the ability to provide a positive outcome for residents in nursing homes. (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)

Several studies suggest that pain is a trigger for challenging behaviour in older adults with cognitive impairment. However, such measured relationships might be confounded due to item overlap as instruments share similar or identical items. The purpose of this study was to examine whether the frequently observed association between pain and challenging behaviour might be traced back to item overlap. This multicentre cross‐sectional study was conducted in 13 nursing homes and examined pain (measure: Pain Assessment in Advanced Dementia Scale) (...) and challenging behaviour (measure: Cohen‐Mansfield Agitation Inventory) in 150 residents with severe cognitive impairment. The extent of item overlap was determined by juxtaposition of both measures’ original items. As expected, comparison between these instruments revealed an extensive item overlap. The statistical relationship between the two phenomena can be traced back mainly to the contribution of the overlapping items, which renders the frequently stated relationship between pain and challenging behaviour trivial. The status quo of measuring such associations must be contested: constructs’ discrimination and instruments’ discrimination have to be discussed critically as item overlap may lead to biased conclusions and assumptions in research as well as to inadequate care measures in nursing practice. (shrink)

Aging has become a serious social problem in China. Traditional informal long-term care is hard to sustain because of the reduction in family size and elders’ children migration to big cities. The institution offering services for the disabled elders has been a tendency. There exists a strange phenomenon: some nursing homes are difficult to enter for most disabled elders, while the other ones must search for elders to maintain operation. Therefore, for the evaluation of nursing homes, two (...) problems should be considered: selecting suitable nursing homes for disabled elders; obtaining the key factors influencing the selection of elders and helping nursing homes improve their services based on the key factors. First, we propose a new DEMATEL method for PLTSs to solve the second problem. Then, we present a novel PROMETHEE method to rank the alternatives and make a sensitivity analysis for criteria. Finally, we illustrate our proposed methods to an evaluation problem in Zhenjiang City by a case study. Based on the case study, we can obtain that our proposed methods are effective and practicable. (shrink)