Part I of the dissertation examines the cognitive aspects of autonomy. The central question concerns what kind of cognitive capacity autonomy is. It will be argued that the concept of autonomy is best understood in terms of a metacognitive capacity of the individual. It is argued that metacognition has two components: procedural reflexivity and metarepresentation. Metarepresentation in turn can be divided into inferential reflexivity and other-attributiveness. These two components are essential for autonomy. Particular emphasis is put on procedural reflexivity. Further, (...) since the essential function of metacognition is control, it is argued that the concept of autonomy, understood as a metacognitive capacity, can be interpreted in terms of control. Issues arising from empirical data from neuroscience on functional, as well as impaired, metacognition, and on undermined autonomy, are dealt with. It is argued that autonomy cannot be determined with respect to subjective conditions. Neurological impairments, like Anton’s Syndrome, dementia, and thought insertion in schizophrenia, are put forward in support of this claim. To determine autonomy we require external conditions. In order to determine whether an individual is autonomous, both the metacognitive status of the individual and the external setting must be considered, since they are in interplay and consequently influence each other. In Part II, the analysis put forward in Part I is applied to Swedish healthcare. It is argued that the distinction between autonomy as a right and as a capacity must be explicit in order to understand what autonomy means and to deal with it effectively in healthcare practice. A discussion about whether or not the patient’s right to autonomy sometimes tends to be over-emphasized in healthcare is put forward. Special emphasis is placed on psychitaric issues such as deinstitutionalization and participation. Following the closure of the mental hospitals, deinstitutionalization and community-based care have become central topics in psychiatry. At the same time, the implementation of such care can be demanding for patients suffering from a persistent mental disorder. In part II it is also suggested that the metacognitive account of the concept of autonomy might help clarify the criteria governing coercive care. Finally, some suggestions concerning developments and improvements in Swedish healthcare, especially in psychiatry, where the concept of autonomy is important but problematic, are put forward. (shrink)

Background Older people’s autonomy is an ethical and legal principle in everyday residential care, but there is a lack of clarity about the roles and responsibilities of the key professional stakeholder groups involved. Research objectives This study aimed to identify and define the roles and responsibilities of the key professional stakeholder groups involved in promoting older people’s autonomy in residential care settings. Research design We used a Delphi method with two iterative rounds of online group discussions and collected data from (...) experts in older people’s care in Finland in summer 2020. The data were analyzed using deductive-inductive content analysis methods. Ethical considerations According to Finnish legislation, this type of research did not need approval from a research ethics committee. Informed consent from the participants was obtained and they were informed about the voluntary nature and confidentiality of the study and their right to withdraw at any time. Results Key professional stakeholders had different roles and responsibilities, but their shared, integrated goal was to achieve older people’s autonomy in residential care settings. Their combined roles and responsibilities covered all aspects of promoting older people’s autonomy, from care and service planning and daily decision-making to service structures that included ethical competencies and monitoring. Multipronged, variable, coordinated strategies were required to identify, assess, and promote autonomy at different levels of care. Conclusion Key professional stakeholders need to work together to provide an unbroken chain of care that provides older people with autonomy in residential care settings. In future, more knowledge is needed about how to create structures to achieve the shared goal of older people’s autonomy in these settings. (shrink)

Background: Autonomy and participation are threatened within the group of older people living in nursing homes. Evidence suggests that healthcare personnel act on behalf of older people but are still excluding them from decision-making in everyday care. Objective: The purpose was to describe registered nurses’ experience of caring for older people in nursing homes to promote autonomy and participation. Research design: A descriptive design with a phenomenological approach was used. Data were collected by semi-structured individual interviews. Analysis was inspired by (...) Giorgi’s method. Participants and research context: A total of 13 registered nurses from 10 nursing homes participated. Ethical considerations: Ethical approval was obtained from the Regional Research Ethics Committee. Informed consent was achieved and confidentiality guaranteed. Findings: The essence of caring for older people in nursing homes to promote autonomy and participation consisted of registered nurses’ awareness of older people’s frailty and the impact of illness to support health and well-being, and awareness of acknowledgement in everyday life and trusting relationships. Paying attention to older people by being open to the persons’ wishes were aspects that relied on registered nurses’ trusting relationships with older people, their relatives and surrounding healthcare personnel. The awareness reflected challenges in caring to promote older people’s right to autonomy and participation in nursing homes. Registered nurses’ strategies, hopes for and/or concerns about development of everyday life in nursing homes were revealed and mirrored their engagement in caring for older people. Discussion and conclusion: Awareness of older people’s frailty in nursing homes and the importance of maintained health and well-being were described as the main source for promoting autonomy and participation. Everyday life and care in nursing homes needs to be addressed from both older people’s and healthcare personnel’s perspectives, to promote autonomy and participation for residents in nursing homes. (shrink)

The aim of this study was to illuminate the meaning of professional carers’ experiences in caring situations when a conflict of interest arises with the older person receiving care. The findings reveal the complexity of the carers’ ambivalence when facing a conflict of interest, weighing up between the older persons’ right to self-determination and external demands. The carers are alone in their ambivalence, and the conclusion is that they need help and support to be more present in the encounter. The (...) implication for this study is to focus on care as a person-centered practice and to focus on people as interdependent on support carers to maintain older people’s right to self-determination in the relationship. (shrink)

Adjustments of everyday life in order to prevent disease or treat illness afflict partly unconscious preferences and cultural expectations that are often difficult to change. How should one, in medical contexts, talk with patients about everyday life in ways that might penetrate this blurred complexity, and help people find goals and make decisions that are both compatible with a good life and possible to accomplish? In this article we pursue the question by discussing how Habermas’ theory of communicative action can (...) be implemented in decision-making processes in general practice. The theory of deliberative decision-making offers practical guidelines for what to talk about and how to do it. For a decision to be rooted in patients’ everyday life it has to take into consideration the patient’s practical circumstances, emotions and preferences, and what he or she perceives as ethically right behaviour towards other people. The aim is a balanced conversation, demonstrating respect, consistency and sincerity, as well as offering information and clarifying reasons. Verbalising reasons for one’s preferences may increase awareness of values and norms, which can then be reflected upon, producing decisions rooted in what the patient perceives as good and right behaviour. The asymmetry of medical encounters is both a resource and a challenge, demanding patient-centred medical leadership, characterised by empathy and ability to take the patient’s perspective. The implementation and adjustments of Habermas’ theory in general practice is illustrated by a case story. Finally, applications of the theory are discussed. (shrink)

The aim of this study was to illuminate the meaning of professional carers’ experiences in caring situations when a conflict of interest arises with the older person receiving care. The findings reveal the complexity of the carers’ ambivalence when facing a conflict of interest, weighing up between the older persons’ right to self-determination and external demands. The carers are alone in their ambivalence, and the conclusion is that they need help and support to be more present in the encounter. The (...) implication for this study is to focus on care as a person-centered practice and to focus on people as interdependent on support carers to maintain older people’s right to self-determination in the relationship. (shrink)