Our study presents an overview of the issues that were brought forward by participants of a moral case deliberation (MCD) project in two elderly care organizations. The overview was inductively derived from all case descriptions (N = 202) provided by participants of seven mixed MCD groups, consisting of care providers from various professional backgrounds, from nursing assistant to physician. The MCD groups were part of a larger MCD project within two care institutions (residential homes and nursing homes). Care providers are (...) confronted with a wide variety of largely everyday ethical issues. We distinguished three main categories: ‘resident’s behavior’, ‘divergent perspectives on good care’ and ‘organizational context’. The overview can be used for agendasetting when institutions wish to stimulate reflection and deliberation. It is important that an agenda is constructed from the bottom-up and open to a variety of issues. In addition, organizing reflection and deliberation requires effort to identify moral questions in practice whilst at the same time maintaining the connection with the organizational context and existing communication structures. Once care providers are used to dealing with divergent perspectives, inviting different perspectives (e.g. family members) to take part in the deliberation, might help to identify and address ethical ‘blind spots’. (shrink)

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

The number of people with dementia is increasing worldwide. At the same time, family and professional caregivers’ resources are limited. A promising approach to relieve these carers’ burden and assist people with dementia is assistive technology. In order to be useful and accepted, such technologies need to respect the values and needs of their intended users. We applied the value sensitive design approach to identify values and needs of patients with dementia and family and professional caregivers in respect to assistive (...) technologies to assist people with dementia in institutionalized care. Based on semi-structured interviews of residents/patients with cognitive impairment, relatives, and healthcare professionals (10 each), we identified 44 values summarized by 18 core values. From these values, we created a values’ network to demonstrate the interplay between the values. The core of this network was caring and empathy as most strongly interacting value. Furthermore, we found 36 needs for assistance belonging to the four action fields of activity, care, management/administration, and nursing. Based on these values and needs for assistance, we created possible use cases for assistive technologies in each of the identified four action fields. All these use cases already are technologically feasible today but are not currently being used in healthcare facilities. This underlines the need for development of value-based technologies to ensure not only technological feasibility but also acceptance and implementation of assistive technologies. Our results help balance conflicting values and provide concrete suggestions for how engineers and designers can incorporate values into assistive technologies. (shrink)

This study aimed to describe and compare the views of nurses and older patients' relatives on factors restricting the maintenance of patient integrity in long-term care. The purposive sample comprised 222 nurses and 213 relatives of older patients in four Finnish long-term care institutions. The data were collected using a self-developed questionnaire addressing five sets of factors relating to patients, relatives, nurses, the organization and society. The maintenance of patient integrity was restricted by: (1) social factors, including lack of respect (...) for long-term geriatric care and lack of adequate resources; (2) patient factors relating to forgetfulness; and (3) factors relating to nurses and relatives in maintaining patient integrity. Better maintenance of patient integrity requires that more consideration is paid to issues of social respect and to the availability of adequate resources. Closer attention must be given to patients who are forgetful and unable to take part in decision making. (shrink)

Ethical problems regularly arise during daily care in nursing homes. These include violation of patients' right to autonomy and to be treated with respect. The aim of this study was to investigate how caregivers emphasize daily dialogue and mutual reflection to reach moral alternatives in daily care. The data were collected by participant observation and interviews with seven caregivers in a Norwegian nursing home. A number of ethical problems linked to 10 patients were disclosed. Moral problems were revealed as the (...) caregivers acted in ways that they knew were against patients' interest. We used a theoretical interpretation according to Habermas' discourse ethics on the importance of dialogue when deciding moral courses of action for patients. This theory has four basic requirements: communicative competence, equality, self-determination, and openness about motives. (shrink)

The degree of success in creating quality care for people suffering from dementia is limited despite extensive research. This article describes Healthcare providers’ experience with the ethical challenges and possibilities in the relationship with patients suffering from dementia and its impact on quality care. The material is based on qualitative, in-depth individual narrative interviews with 12 professional Healthcare providers from two different nursing homes. The transcribed interview texts were subjected to a phenomenological–hermeneutical interpretation. To provide quality care to patients with (...) dementia, the Healthcare providers emphasized the importance of sensing and understanding the patients’ emotional and bodily expressions through sentient attentiveness and recognition of the patient as a person. They also described reciprocity of expressions in the relationship where the patient recognized them both as persons and Healthcare providers. The analyses of the findings are, inter alia, discussed in light of Løgstrup’s relational philosophy of ethics. (shrink)

There is an increasing body of research on what kind of ethical challenges health care professionals experience regarding the quality of care. In the Netherlands the Dutch Health Care Inspectorate is responsible for monitoring and regulating the quality of health care. No research exists on what kind of ethical challenges inspectors experience during the regulation process itself. In a pilot study we used moral case deliberation as method in order to reflect upon inspectors’ ethical challenges. The objective of this paper (...) is to give an overview of the ethical challenges which health care inspectors encounter in their daily work. A thematic qualitative analysis was performed on cases that were collected from health care inspectors in a moral case deliberation pilot study. Eight themes were identified in health care regulation. These can be divided in two categories: work content and internal collaboration. The work of the health care inspectorate is morally loaded and our recommendation is that some form of ethics support is provided for health care inspectors. (shrink)

Background:Palliative carers constantly face ethical problems. There is lack of organised support for the carers to handle these ethical problems in a consistent way. Within organisational ethics, we find models for moral deliberation and for developing organisational culture; however, they are not combined in a structured way to support carers’ everyday work.Research objective:The aim of this study was to describe ethical problems faced by palliative carers and develop an adapted organisational set of values to support the handling of these problems.Research (...) design:Ethical problems were mapped out using focus groups and content analysis. The organisational culture were developed using normative analysis and focus group methodology within a participatory action research approach.Main participants and research context:A total of 15 registered nurses and 10 assistant nurses at a palliative unit at a major University Hospital in Sweden.Ethical considerations:The study followed standard ethics guidelines concerning informed consent and confidentiality.Findings:We found six categories of ethical problems and five categories of organisational obstacles. Based on these findings, we developed a set of values in three levels: a general level, an explanatory level and a level of action strategies.Discussion:The ethical problems found corresponded to problems in other studies with a notable exception, the large focus on patient loved ones. The three-level set of values is a way to handle risks of formulating abstract values not providing guidance in concrete care voiced in other studies.Conclusion:Developing a three-level set of values adapted to the specific ethical problems in a concrete care setting is a first step towards a better handling of ethical problems. (shrink)

Background:Ethical issues are increasingly being reported by care-providers; however, little is known about the nature of these issues within the nursing home. Ethical issues are unavoidable in healthcare and can result in opportunities for improving work and care conditions; however, they are also associated with detrimental outcomes including staff burnout and moral distress.Objectives:The purpose of this review was to identify prior research which focuses on ethical issues in the nursing home and to explore staffs’ experiences of ethical issues.Methods:Using a systematic (...) approach based on Aveyard (2014), a literature review was conducted which focused on ethical and moral issues, nurses and nursing assistants, and the nursing home.Findings:The most salient themes identified in the review included clashing ethical principles, issues related to communication, lack of resources and quality of care provision. The review also identified solutions for overcoming the ethical issues that were identified and revealed the definitional challenges that permeate this area of work.Conclusions:The review highlighted a need for improved ethics education for care-providers. (shrink)

DNR decisions are frequently made in oncology and hematology care and physicians and nurses may face related ethical dilemmas. Ethics is considered a basic competence in health care and can be understood as a capacity to handle a task that involves an ethical dilemma in an adequate, ethically responsible manner. One model of ethical competence for healthcare staff includes three main aspects: being, doing and knowing, suggesting that ethical competence requires abilities of character, action and knowledge. Ethical competence can be (...) developed through experience, communication and education, and a supportive environment is necessary for maintaining a high ethical competence. The aim of the present study was to investigate how nurses and physicians in oncology and hematology care understand the concept of ethical competence in order to make, or be involved in, DNR decisions and how such skills can be learned and developed. A further aim was to investigate the role of guidelines in relation to the development of ethical competence in DNR decisions. Individual interviews were conducted with fifteen nurses and sixteen physicians. The interviews were analyzed using thematic content analysis. Physicians and nurses in the study reflected on their ethical competence in relation to DNR decisions, on what it should comprise and how it could be developed. The ethical competence described by the respondents related to the concepts being, doing and knowing. In order to make ethically sound DNR decisions in oncology and hematology care, physicians and nurses need to develop appropriate virtues, improve their knowledge of ethical theories and relevant clinical guidelines. Ethical competence also includes the ability to act upon ethical judgements. Continued ethical education and discussions for further development of a common ethical language and a good ethical working climate can improve ethical competence and help nurses and physicians cooperate better with regard to patients in relation to DNR decisions, in their efforts to act in the best interest of the patient. (shrink)

It is a common experience among care professionals that persons with dementia often say ‘no’ to conventional caring measures such as taking medication, eating or having a shower. This tendency to say ‘no’ may also concern the use of assistive technologies such as fall detectors, mobile safety alarms, Internet for social contact and robots. This paper provides practical recommendations for care professionals in home health care and social care about how to respond to such resistiveness towards assistive technologies. Apart from (...) the option of accepting the ‘no’, it discusses a number of methods for influencing persons with dementia in order to overcome the ‘no’. These methods range from various non-coercive measures—including nudging—to coercion. It is argued that while conventional caring measures like those mentioned are essential for survival, health or hygiene, assistive technologies are commonly merely potentially beneficial supplements. With this in mind, it is concluded that care professionals should be more restrictive in using methods of influence involving some degree of pressure regarding assistive technologies than regarding conventional caring measures. (shrink)

Background: As frail older people might have difficulties in expressing themselves, their needs are often interpreted by others, for example, by significant others, whose information health care staff often have to rely on. This, in turn, can put health care staff in ethically difficult situations, where they have to choose between alternative courses of action. One aspect that might be especially difficult to express is that of existential loneliness. We have only sparse knowledge about whether, and in what way, the (...) views of frail older persons and their significant others concerning existential loneliness are in concordance. Objective: To contrast frail older persons’ experiences with their significant others’ perceptions of existential loneliness. Methods: A case study design was chosen for this study. Individual interviews with frail older persons and interviews with their significant others, as well as field notes, served as a basis for the study. A thematic analysis was used to interpret data. Ethical considerations: This study was conducted in accordance with the principles of research ethics. Findings: The findings showed three themes: Meaningless waiting in contrast to lack of activities, Longing for a deeper connectedness in contrast to not participating in a social environment and Restricted freedom in contrast to given up on life. Discussion: Knowledge about the tensions between older persons’ and their significant others’ views of existential loneliness could be of use as a basis for ethical reflections on the care of older people and in the encounter with their significant others. Conclusion: It is of importance that health care professionals listen to both the frail older person and their significant other and be aware of whose voice that the care given is based on, in order to provide care that is beneficial and not to the detriment of the older person. (shrink)

In spite of the growing interest in nursing ethics, few studies have focused on ethical dilemmas experienced by nurses working with clinical studies as ‘research nurses’. The aim of the present study was to describe and explore ethical dilemmas that Swedish research nurses experience in their day-to-day work. In a qualitative study a purposeful sample of six research nurses from five wards of differing disciplines in four Swedish hospitals was interviewed. The analysis displayed several examples of ethical dilemmas, primarily tensions (...) between the nurses’ obligations to the study and to the patients involved. A guiding moral principle for the nurses was patient-centeredness, where the interest of research must not override the interest of the patient. In situations where tensions between research and patient interests occurred, and doctors and nurses disagreed upon the judgement, the nurses sometimes chose to follow the doctors’ advice, and thus acted against their own moral judgment. Such situations seemed to create feelings of moral distress among the nurses. They described their profession as being ‘invisible’ and as lacking opportunities for ethical competence building. The conclusion is that research nurses frequently experience severe and difficult ethical dilemmas in their daily work. They need to be acknowledged as a particular profession in the health care organisation and encouraged to develop their specific ethical competence. (shrink)

The aim of the present study was to describe and explore the perception of ethical guidelines and their role in ethical competence-building among Swedish physicians and research nurses. Twelve informants were interviewed in depth. The results demonstrated that the informants had a critical attitude towards ethical guidelines and claimed to make little use of them in practical moral judgements. Ethical competence was seen primarily as character-building, related to virtues such as being empathic, honest and loyal to patients. Ethical competence was (...) assumed to be learned through good examples, role models and practical experience, while ethical guidelines were not perceived as valuable in this process. In order to improve the staff's familiarity with and the usability of ethical guidelines, the workplace needs to provide opportunities for ethical dialogues. In such discussions, argumentation can improve, virtues can be developed and guidelines can be usefully invoked. (shrink)

There are studies on the normative ethical frameworks used by long-term care staff and studies proposing how staff should reason, but few studies explore how staff actually reason. This study reports on the ethical reasoning process and experiences of moral distress of long-term care staff in the provision of social care. Seven interdisciplinary focus groups were conducted with twenty front-line staff. Staff typically did not have difficulty determining the ethical decision and/or action; however, they frequently experience moral distress. To manage (...) these experiences of moral distress in making ethical decisions, staff 1) comply with being told what to do out of fear of consequences, 2) defer decisions to family, 3) “have a meeting,” 4) socialization into and acceptance of workplace culture. Findings suggest that to better understand how and why staff make ethical decisions and improve quality and ethical care, we must explore the interaction between front-line practice and organizational and public policy. (shrink)

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

Next SectionObjective The purpose of this article is to investigate the need for ethics support in Dutch healthcare institutions in order to understand why ethics support is often not used in practice and which factors are relevant in this context. Methods This study had a mixed methods design integrating quantitative and qualitative research methods. Two survey questionnaires, two focus groups and 17 interviews were conducted among board members and ethics support staff in Dutch healthcare institutions. Findings Most respondents see a (...) need for ethics support. This need is related to the complexity of contemporary healthcare, the contribution of ethics support to the core business of the organisation and to the surplus value of paying structural attention to ethical issues. The need for ethics support is, however, not unconditional. Reasons for a lacking need include: aversion of innovations, negative associations with the notion of ethics support service, and organisational factors like resources and setting. Conclusion There is a conditioned need for ethics support in Dutch healthcare institutions. The promotion of ethics support in healthcare can be fostered by focusing on formats which fit the needs of (practitioners in) healthcare institutions. The emphasis should be on creating a (culture of) dialogue about the complex situations which emerge daily in contemporary healthcare practice. (shrink)

Internationally, the prevalence of clinical ethics support (CES) in health care has increased over the years. Previous research on CES focused primarily on ethics committees and ethics consultation, mostly within the context of hospital care. The purpose of this article is to investigate the prevalence of different kinds of CES in various Dutch health care domains, including hospital care, mental health care, elderly care and care for people with an intellectual disability. A mixed methods design was used including two survey (...) questionnaires, sent to all health care institutions, two focus groups and 17 interviews with managing directors or ethics support staff. The findings demonstrate that the presence of ethics committees is relatively high, especially in hospitals. Moral case deliberation (MCD) is available in about half of all Dutch health care institutions, and in two-thirds of the mental health care institutions. Ethics consultants are not very prominent. A distinction is made between explicit CES forms, in which the ethical dimension of care is structurally and professionally addressed and implicit CES forms, in which ethical issues are handled indirectly and in an organic way. Explicit CES forms often go together with implicit forms of CES. MCD might function as a bridge between the two. We conclude that explicit and implicit CES are both relevant for clinical ethics in health care. We recommend research regarding how to combine them in an appropriate way. (shrink)

In previous literature, ethicists mention several goals of Clinical Ethics Support (CES). It is unknown what key persons in healthcare institutions see as main–—and sub-goals of CES. This article presents the goals of CES as perceived by board members and members of ethics support staff. This is part of a Dutch national research using a mixed methods design with questionnaires, focus groups and interviews. Quantitative and qualitative data were analyzed and combined in an iterative process. Four main clusters of goals (...) were found: 1) encouraging an ethical climate, 2) fostering an accountable and transparent organization, 3) developing professionalism and a final goal, overarching the previous three, 4) good care. Most important sub-goals of CES were: attention for ethical issues, raising awareness of ethical issues, fostering ethical reflection and supporting employees. The article ends with a discussion on the desirability to further operationalize the general goal of good care, the context-boundedness of our findings and the need to relate goals of CES to the features of organizational cultures to further improve the integration of CES in healthcare institutions. (shrink)

Our study presents an overview of the issues that were brought forward by participants of a moral case deliberation (MCD) project in two elderly care organizations. The overview was inductively derived from all case descriptions (N = 202) provided by participants of seven mixed MCD groups, consisting of care providers from various professional backgrounds, from nursing assistant to physician. The MCD groups were part of a larger MCD project within two care institutions (residential homes and nursing homes). Care providers are (...) confronted with a wide variety of largely everyday ethical issues. We distinguished three main categories: ‘resident’s behavior’, ‘divergent perspectives on good care’ and ‘organizational context’. The overview can be used for agendasetting when institutions wish to stimulate reflection and deliberation. It is important that an agenda is constructed from the bottom-up and open to a variety of issues. In addition, organizing reflection and deliberation requires effort to identify moral questions in practice whilst at the same time maintaining the connection with the organizational context and existing communication structures. Once care providers are used to dealing with divergent perspectives, inviting different perspectives (e.g. family members) to take part in the deliberation, might help to identify and address ethical ‘blind spots’. (shrink)

This article analyses the general ethical milieu in a nursing home for elderly residents and provides a decision-making model for analysing the ethical situations that arise. It considers what it means for the residents to live together and for the staff to be in ethically problematic situations when caring for residents. An interpretative phenomenological approach and Sandman’s ethical model proved useful for this purpose. Systematic observations were carried out and interpretation of the general ethical milieu was summarized as ‘being in (...) the same world without meeting’. Two themes and four subthemes emerged from the analysis. Three different ethical problems were analysed. The outcome of using the decision-making model highlighted the discrepancy between the solutions used and well-founded solutions to these problems. An important conclusion that emerged from this study was the need for a structured tool for reflection. (shrink)