Different ideas of the normative relevance of autonomy can give rise to profoundly different action-guiding principles in healthcare. If autonomy is seen as a value rather than as a right, it can be argued that patients’ decisions should sometimes be overruled in order to protect or promote their own autonomy. We refer to this as paternalism in the name of autonomy. In this paper, we discuss different elements of autonomy (decision-making capacity, efficiency, and authenticity) and arguments in favor of paternalism (...) for the sake of autonomy that have been proposed in the bioethical debate. We argue that if autonomy is valuable, then paternalism for the sake of autonomy may be justified. However, policies allowing paternalism in the name of autonomy may be self-defeating. (shrink)

Research indicates the essentiality of dignity as a vital component for quality of life, reconfirming the emphasis on dignity preservation in the international code of nursing ethics. Applying Noblit and Hare’s meta-ethnography, the aim of the study was to develop a theory model by synthesizing 10 qualitative articles from various cultural contexts, exploring nurse and allied healthcare professional perception/practice concerning dignity-preserving dementia care. “Advocating the person’s autonomy and integrity,” which involves “having compassion for the person,” “confirming the person’s worthiness and (...) sense of self,” and “creating a humane and purposeful environment,” was identified as a primary foundation for dignity-preserving dementia care. “Balancing individual choices among persons no longer able to make sound decisions, against the duty of making choices on behalf of the person,” which involves “persuasion” and/or “mild restraint,” was considered a crucial aspect in certain situations. “Sheltering human worth—remembering those who forget” was identified as a comprehensive motive and core value within dignity-preserving dementia care. (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: The use of forced treatment and care of home-dwelling persons with dementia is a universally important topic. These patients are completely dependent on care from others to continue living at home. Aim: This study aimed to gain insights into formal decisions related to the forced treatment and care of home-dwelling persons with dementia. Design and sample: This is a cross-sectional study, based on formal decisions of forced treatment and care of home-dwelling persons with dementia in Norway between 1 January (...) 2015 and 31 December 2016. Methods: Descriptive statistical analysis. Statistically significant associations suitable for binary logistic regression were presented as odds ratios with 95% confidence intervals. Ethical considerations: Approved by The Regional Committee for Medical and Health Research Ethics, and by the Norwegian Center for Research. Results: We found 108 formal decisions of forced treatment and care of persons with dementia. Decisions of admission represented 57% of the data, other medical and safety decisions 27%, and assistance with activities of daily living 16%. In most cases, physicians were responsible for the decisions (77%), but nurses and family members were often involved. Discussion and conclusion: This study demonstrated a prevalence rate of formally documented decisions of forced treatment and care much lower than findings in previous studies. Poor documentation may constitute a risk for the safety and wellbeing of persons with dementia. Although physicians were usually responsible for the decisions, nurses and family members were often involved in the process. Family participation in forced treatment and care raises ethical dilemmas. More research on the experiences of nurses, persons with dementia and family members with forced treatment and care is needed to aid ethical, legal, and clinically challenging decision-making processes. (shrink)

Background: In order to fully understand nurses’ ethical decision-making in cases of physical restraint in acute older people care, contextual influences on the process of decision-making should be clarified. Research questions: What is the influence of context on nurses’ decision-making process in cases of physical restraint, and what is the impact of context on the prioritizing of ethical values when making a decision on physical restraint? Research design: A qualitative descriptive study inspired by the Grounded Theory approach was carried out. (...) Participants and research context: In total, 21 in-depth interviews were carried out with nurses working on acute geriatric wards in Flanders, Belgium. Ethical considerations: The research protocol was approved by the Ethics Committee of the Faculty of Medicine, Leuven. Findings: Relationships with nursing colleagues and the patient’s family form an inter-personal network. Nurses also point to the importance of the procedural–legal context as expressed in an institutional ethics policy and procedures, or through legal requirements concerning physical restraint. Furthermore, the architectural structure of a ward, the availability of materials and alternatives for restraint use can be decisive in nurses’ decision-making. All interviewed nurses highlighted the unquestionable role of the practical context of care. Context can have a guiding, supportive, or decisive role in decision-making concerning the application of physical restraint. Discussion: The discussion focuses on the role of the inter-personal network of nurses on the process of decision-making. Conclusion: An institutional ethics policy and a value-supportive care environment can support nurses in their challenge to take ethically sound decisions. (shrink)

Background: Situations where patients resist necessary help can be professionally and ethically challenging for health professionals, and the risk of paternalism, abuse and coercion are present. Research question: The purpose of this study was to examine ethical challenges in situations where the patient resists healthcare. Research design: The method used was clinical application research. Academic staff and clinical co-researchers collaborated in a hermeneutical process to shed light on situations and create a basis for new action. Participants and research context: Four (...) research groups were established. Each group consisted of six to eight clinical co-researchers, all employees with different health profession backgrounds and from different parts of the municipal healthcare services, and two scientific researchers. Ethical considerations: The study was conducted in compliance with ethical guidelines and principles. Participants were informed that participation was voluntary and that confidentiality would be maintained. They signed a consent form. Findings: The findings showed that the situations where patients opposed help related to personal hygiene, detention in an institution and medication associated with dental treatment. The situations were perceived as demanding and emotionally stressful for the clinicians. Discussion: The situations can be described as everyday ethics and are more characterised by moral uncertainty and moral distress than by being classic ethical dilemmas. Conclusion: Norwegian legislation governing the use of force seems to provide decision guidance with the potential to reduce uncertainty and moral stress if the clinicians’ legal competence had been greater. (shrink)

Critical realism, a philosophical framework originally developed by Roy Bhaskar in the 1970s, represents a relatively new approach to research generally and to nursing research in particular. This article explores the ontological and epistemological tenets of critical realism and examines the application of critical realist principles to nursing research and practice through a review of the literature. It is evident that few published nursing research studies have, as of yet, utilized critical realism as their paradigm of choice. Both the strengths (...) and limitations of the presentation and use of critical realism in these studies are discussed in this article. Given the varying degrees of success of the authors in explicating critical realism as a philosophical framework, the value of critical realism to the research study, and the ways in which usage of the critical realist framework influenced development of the study and interpretation of findings, it is evident that the quality of future publications espousing the use of critical realism must continue to be strengthened significantly. (shrink)

Background Over the last years, there has been a growth in care solutions aiming to support home-dwelling persons with dementia. Assistive technology and voluntarism have emerged as supplements to traditional homecare and daycare centers. However, patient participation is often lacking in decision-making processes, undermining ethical principles and basic human rights. Research objective This study explores the perceptions of persons with dementia toward assistive technology, volunteer support, homecare services, and daycare centers. Research design A hermeneutical approach was chosen for this study, (...) using a semi-structured interview guide to allow for interviews in the form of open conversations. Participants and research context Twelve home-dwelling persons with dementia participated in the study. The participants were recruited through municipal daycare centers. Ethical considerations Interviews were facilitated within a safe environment, carefully conducted to safeguard the participants’ integrity. The Regional Committee for Medical and Health Research Ethics, Western Norway (Project number 2016/1630) approved the study. Findings The participants shared a well of reflections on experience and attitudes toward the aspects explored. They described assistive technology as possibly beneficial, but pointed to several non-beneficial side effects. Likewise, they were hesitant toward volunteer support, depending on how this might fit their individual preferences. Homecare services were perceived as a necessary means of care, its benefits ascribed to a variety of aspects. Similarly, the participants’ assessments of daycare centers relied on specific aspects, with high individual variety. Discussion and conclusion The study indicates that the margins between whether these specific care interventions were perceived as supportive or infringing may be small and details may have great effect on the persons’ everyday life. This indicates that patient participation in decision-making processes for this group is—in addition to be a judicial and ethical requirement—crucial to ensure adequate care and support. (shrink)

Ethical research practice requires inclusionary approaches that enable people to contribute as fully as possible. Not enough is yet known about the impacts of dementia on daily life, however, people with dementia may find inclusion in research challenging, as the ‘cognitive load’ required may be overwhelming. When responding is difficult, others may contribute and the voice of people with dementia may be diminished. In this paper, the method of walking interviews is reflected on following a study that examined the acceptability (...) and usefulness of Global Positions Systems (GPS). Attention is drawn to an observation of the contributions people with dementia made whilst out walking with the researchers. When out walking, people with dementia used the environment as sensory prompts to start conversations, and these discussions shaped research data, and enabled people with dementia to raise concerns about the impacts of dementia, their futures and what they feared for themselves and their families. The challenges that people with dementia faced in negotiating everyday practices were visible. The person with dementia showed the researcher around their neighbourhood, and this significantly changed the interview dynamic and positioned people with dementia as leading the interaction. (shrink)