Understanding people's experiences of the formal health and social care system for co-occurring heavy alcohol use and depression through the lens of relational autonomy: A qualitative study.

BACKGROUND AND AIMS: Heavy alcohol use and depression commonly co-occur. However, health and social care services rarely provide coordinated support for these conditions. Using relational autonomy, which recognizes how social and economic contexts and relational support alter people's capacity for agency, this study aimed to (1) explore how people experience formal care provision for co-occurring alcohol use and depression, (2) consider how this context could lead to adverse outcomes for individuals and (3) understand the implications of these experiences for future policy and practice. DESIGN: Semi-structured qualitative interviews underpinned by the methodology of interpretive description. SETTING: North East and North Cumbria, UK. PARTICIPANTS: Thirty-nine people (21 men and 18 women) with current or recent experience of co-occurring heavy alcohol use ([Alcohol Use Disorders Identification Test [AUDIT] score ≥ 8]) and depression ([Patient Health Questionnaire test ≥ 5] screening tools to give an indication of their current levels of alcohol use and mental score). MEASUREMENTS: Semi-structured interview guide supported in-depth exploration of the treatment and care people had sought and received for heavy alcohol use and depression. FINDINGS: Most participants perceived depression as a key factor contributing to their heavy alcohol use. Three key themes were identified: (1) 'lack of recognition' of a relationship between alcohol use and depression and/or contexts that limit people's capacity to access help, (2) having 'nowhere to go' to access relevant treatment and care and (3) 'supporting relational autonomy' as opposed to assuming that individuals can organize their own care and recovery. Lack of access to appropriate treatment and provision that disregards individuals' differential capacity for agency may contribute to delays in help-seeking, increased distress and suicidal ideation. CONCLUSIONS: Among people with co-occurring heavy alcohol use and depression, lack of recognition of a relationship between alcohol use and depression and formal care provision that does not acknowledge people's social and economic context, including their intrinsic need for relational support, may contribute to distress and limit their capacity to get well.

Conhecimento e percepção de enfermeiros frente à sedação paliativa na oncologia / Knowledge and perception of nurses dealing with palliative sedation in oncology / Conocimiento y percepción de los enfermeros frente a la sedación paliativa en oncología

Objetivo: compreender o conhecimento e a percepção de enfermeiros quanto à sedação paliativa em oncologia. Método: estudo qualitativo, exploratório e descritivo, com delineamento transversal. Participaram do estudo 16 enfermeiros atuantes na oncologia de um hospital de referência localizado ao norte do Rio Grande do Sul. A coleta de dados ocorreu por meio de entrevista gravada com duração de aproximadamente 10 minutos, sendo aplicado um roteiro de perguntas fechadas com a finalidade de caracterizar os enfermeiros participantes da pesquisa, e perguntas abertas e específicas para contemplar o objetivo do estudo. O método utilizado para o diagnóstico e verificação dos dados da pesquisa foi a análise de conteúdo de Bardin. Os dados foram analisados e codificados por meio do software NVivo 10, que gerou categorias de similaridade e correlações. Resultados: surgiram cinco categorias intituladas "Conhecimento sobre sedação paliativa; Percepção sobre sedação paliativa na oncologia; Sentimentos em relação à sedação paliativa aos pacientes oncológicos; Vivência em relação à sedação paliativa em pacientes oncológicos e Participação do enfermeiro no procedimento de sedação paliativa". Conclusão: o enfermeiro atua de forma efetiva e fundamental na prestação do cuidado e na avaliação do paciente em sedação paliativa, mas ainda encontram-se diversos obstáculos relacionados à participação na tomada de decisões. Evidencia-se a importância de novas pesquisas sobre a temática, como também a implementação de protocolos que subsidiem na indicação da sedação paliativa.(AU)

Objective: to understand the knowledge and perception of nurses dealing with palliative sedation in oncology. Method: this is a qualitative, exploratory, and descriptive study, with a cross-sectional design. The study included 16 nurses working in oncology at a reference hospital located in the north of Rio Grande do Sul. Data were collected through recorded interviews lasting approximately 10 minutes, with a script of closed questions being applied to characterize the nurses participating in the research, and open and specific questions, to contemplate the objective of the study. The method used for the diagnosis and verification of research data was Bardin's content analysis. Data were analyzed and coded using the NVivo 10 software, which generated categories of similarity and correlations. Results: five categories emerged: (i) Knowledge about palliative sedation; (ii) Perception of palliative sedation in oncology; (iii) Feelings regarding palliative sedation in cancer patients; (iv) Experience with palliative sedation in cancer patients; and (v) Participation of the nurse in the palliative sedation procedure. Conclusion: nurses act effectively and fundamentally in providing care and evaluating patients undergoing palliative sedation, but there are still several obstacles related to their participation in decision-making. The importance of new research on the subject is evident, as well as the implementation of protocols that support the indication of palliative sedation.(AU)

Objetivo: comprender el conocimiento y la percepción de los enfermeros sobre la sedación paliativa en oncología. Método: estudio cualitativo, exploratorio y descriptivo, con diseño transversal. El estudio abarcó 16 enfermeros que trabajaban en oncología en un hospital de referencia localizado en el norte de Rio Grande do Sul. La colecta de datos ocurrió por medio de entrevista grabada con duración aproximada de 10 minutos, siendo aplicado un guión de preguntas cerradas con la finalidad de caracterizar los enfermeros participantes de la investigación, y preguntas abiertas y específicas para contemplar el objetivo del estudio. El método utilizado para el diagnóstico y verificación de los datos de la investigación fue el análisis de contenido de Bardin. Los datos fueron analizados y codificados utilizando el software NVivo 10, que generó categorías de similitud y correlaciones. Resultados: surgieron cinco categorías tituladas "Conocimientos sobre sedación paliativa; Percepción de la sedación paliativa en oncología; Sentimientos con respecto a la sedación paliativa para pacientes con cáncer; Experiencia con sedación paliativa en pacientes oncológicos y participación de Enfermeros en el procedimiento de sedación paliativa". Conclusión: el enfermero actúa de forma eficaz y fundamental en la prestación del cuidado y en la evaluación del paciente en sedación paliativa, pero aún existen varios obstáculos relacionados con la participación en la toma de decisiones. Es evidente la importancia de seguir investigando sobre el tema, así como la implementación de protocolos que sustenten la indicación de la sedación paliativa.(AU)

[The Decision-Making Autonomy of Critical Patients at End of Life From the Perspective of Relational Autonomy: A Case Discussion].

Respect for autonomy is an important principle of medical ethics. Individuals exist within socially embedded networks that include many people, and develop their sense of self and decision-making capacity through network relationships. The concept of relational autonomy has been proposed as a feasible alternative to individual autonomy. Within the framework of relational autonomy, an individual builds up their decision-making capacities through continuous interaction, delivering information and knowledge to the medical team, family, and other important relations while considering their own social and cultural backgrounds within the contexts of trust, caring, and sincere collaboration. The authors of this study integrated the concept of relational autonomy and analyzed the decision-making autonomy of critical patients. When a patient has decision-making capacity, health professionals must provide a trusting, open, and caring communication environment for all important stakeholders to interact, discuss, and assist patients to demonstrate their autonomy. If a patient is unconscious or unable to make decisions, their wishes need to be respected. However, if this patient has not signed a document of intent, the legal representative must respect patient autonomy in accordance with their previous wishes and values. However, the disease prognosis is not easy to predict, the public and health professionals lack knowledge of advance directives, and it is considered taboo to talk about death. Advance directives remain unpopular. Therefore, we hope this article may assist health professionals to demonstrate patient relational autonomy in medical decision situations.

Older patients' autonomy when cared for at emergency departments.

BACKGROUND: Older patients in emergency care often have complex needs and may have limited ability to make their voices heard. Hence, there are ethical challenges for healthcare professionals in establishing a trustful relationship to determine the patient's preferences and then decide and act based on these preferences. With this comes further challenges regarding how the patient's autonomy can be protected and promoted. AIM: To describe nurses' experiences of dealing with older patients' autonomy when cared for in emergency departments (EDs). RESEARCH DESIGN: This study adopted reflective lifeworld theory and a phenomenological design. PARTICIPANTS AND RESEARCH CONTEXT: A total of 13 open-ended interviews were performed with nurses working at two EDs in Sweden. ETHICAL CONSIDERATIONS: The study was reviewed by the Ethical Advisory Board in South East Sweden and conducted according to the Declaration of Helsinki. All participants gave consent. FINDINGS: Nurses' experiences of dealing with older patients' autonomy in EDs are characterized by moving in a conflicting uphill struggle, indicating obscure thoughts on how patient autonomy can be protected in an ethically challenging context. The phenomenon is further described with its meaning constituents: 'Being hampered by prioritization under stress', 'Balancing paternalism and patient autonomy', 'Making decisions without consent in the patient's best interests' and 'Being trapped by notions of legitimate care needs'. CONCLUSION: Stressful work conditions and lacking organizational strategies in EDs contribute to nurses maintaining unjustified paternalistic care, regardless of the patient's ability and medical condition, and questioning who has legitimacy for participating in decisions about care. The nurses' protection and promotion of older patients' autonomy is dependent on the opportunity, ability and willingness to create a patient relationship where the patient's voice and preferences are valued as important. Consequently, strategies are needed to improve patient autonomy in EDs based on the idea of 'relational autonomy'.

Relational autonomy and the clinical relationship in dementia care.

The clinical relationship (or doctor-patient relationship) has been underexplored in dementia care. This is in part due to the way that the clinical relationship has been articulated and understood in bioethics. Robert Veatch's social contract model is representative of a standard view of the clinical relationship in bioethics. But dementia presents formidable challenges to the standard clinical relationship, including ambiguity about when the clinical relationship begins, how it weathers changes in narrative identity of patients with dementia, and how the intimate involvement of family fits alongside a paradigmatically dyadic relationship. Drawing on work in recent feminist theory, a critique is offered of the standard clinical relationship in bioethics as underwritten by an individualistic conception of autonomy. An alternative view of the clinical relationship in dementia, one that embraces a relational account of autonomy, is put forward.

A Wider Understanding of a Patient's Relational Autonomy at the Time of Death.

Respect for autonomy is a key concept in contemporary bioethics and in ethics at the end of life in particular. An individualistic interpretation of autonomy may not incorporate the aspects of consideration that patients may have for their wider construct of personhood, which includes their love and consideration for their families. This anonymous case describes the intricacies of a patient's decision making at the end of life, the choices she made, and how her decisions changed as her situation evolved. The tension this produced within the medical team is unpacked using a lens of compassionate care in the intensive care unit.

Acknowledging vulnerability in ethics of palliative care - A feminist ethics approach.

Patients in need of palliative care are often described as vulnerable. Being vulnerable can sometimes be interpreted as the opposite of being autonomous, if an autonomous person is seen as an independent, self-sufficient person who forms decisions independently of others. Such a dichotomous view can create a situation where one has experiences of vulnerability that cannot be reconciled with the central ethical principle of autonomy. The article presents a feminist ethical perspective on the conceptualisation of vulnerability in the context of palliative care. It does so through the lens of the concepts of inherent and pathogenic vulnerability from the taxonomy on vulnerability suggested by Mackenzie et al. To differentiate between forms of vulnerability, is important since even though vulnerability can be regarded as a shared life condition it can be the product of practices creating harm to the patient. The article also presents an analysis of how vulnerability can be included in the interpretation of the ethical principle of autonomy, in order to be relevant in palliative care where vulnerability is salient, namely, as relational autonomy. Furthermore, two practical implications for nursing practice are suggested. Firstly, to acknowledge vulnerability as a shared life condition one needs training in order to neither be overwhelmed by one's own vulnerability, nor become invulnerable when facing vulnerability in others. Secondly, to foster relational autonomy includes navigating between the patient exercising their autonomy within a framework of relations, and shielding the patient from paternalistic practices. Nurses could be particularly suited for this role, which includes creating an environment which is open and supportive; navigating between patient, family and staff; seeing and acknowledging the complex situation in which patient autonomy is actually played out; and promoting patient autonomy.

Experiences of inpatient rehabilitation from the perspective of persons with acquired brain injury.

BACKGROUND: Perspectives of individuals with acquired brain injury (ABI) regarding inpatient rehabilitation experiences can inform patient-centered care; however, these voices are under-represented in the literature. PURPOSE: To explore the experiences, needs, and preferences of patients from an ABI inpatient rehabilitation program in Ontario. METHODS: Using an interpretive description approach, we interviewed 12 participants and analyzed the transcripts inductively to generate themes. FINDINGS: We identified three major themes: (1) Life Rerouted - participants felt their lives diverted due to ABI, with rehabilitation seen as a way to return to pre-injury life, (2) Autonomy within Rehab highlighted the perceived importance of personal autonomy in decision-making within rehabilitation, and (3) Life (and Recovery) Go On reflected an ongoing recovery process after discharge - leading to mixed emotions. An overall message, "re-establishing personal identity is important to the recovery process," reflected theories of biographical disruption and relational autonomy. IMPLICATIONS: Our findings provide a patient perspective for clinicians and administrators to consider. We found that ABI was significantly disruptive to personal identity - resulting in tensions in autonomy while attempting to reclaim a sense of identity. We suggest counseling services and strategies supporting post-injury adjustment, along with ways for rehabilitation professionals to enhance patient autonomy where possible.Implications for rehabilitationSustaining an ABI can significantly disrupt personal identity and sense of autonomy - especially as persons occupy the role of "patient" while in inpatient rehabilitation.Psychological support is recommended to address the impacts of ABI on patients' sense of identity, as well as on family members.Strategies of support might include, providing formal psychotherapy, as well as creating opportunities for patients and family members to discuss the changes they are experiencing, and to establish their personal narratives (e.g., through writing or art) or peer mentorship programs between discharged and current patients.Clinicians can enhance patient autonomy by increasing opportunities for communication with patients about choice; educating patients and family members on the rehabilitation team's decision-making process, and other methods that increase communication and provide consistent up-to-date information to patients and their family members.

A Systematic Literature Review of Relational Autonomy in Dialysis Decision Making.

Nephrology interdisciplinary guidelines, professional codes of ethics, principle-based ethical standards, and literature promote patient autonomy and self-determination through shared decision making as ethical practice. Healthcare professionals are accountable for practice that is mindful of the impact of cultural diversity and community on the values and beliefs of the patient, an important part of shared decision making (SDM). Despite previous research regarding dialysis decision making, relational autonomy in chronic kidney disease (CKD) and end-stage kidney disease SDM conversations is not well understood. This systematic literature review used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses framework for identifying peer-reviewed literature on SDM for CKD. The findings were summarized into four broad themes: (1) promoting autonomy is a foundation of medical caring; (2) providers have a responsibility to respond to their asymmetrical social power; (3) autonomy is situated within the context of the patient; and (4) dialogue is a tool that negotiates clinical recommendations and patient goals. The caring practices of promoting autonomy with a dialogical resolution of a conflict acknowledging the interdependence of the parties and the patient's social-relational situatedness support a perspective of relational autonomy in dialysis decision-making practice and research.

Family Involvement in the End-of-Life Decision-Making Process: Legal and Bioethical Analysis of Empirical Findings.

End-of-life decision making involves clinicians, patients, and relatives; yet, the law in Israel hardly recognises the role of relatives. This raises the question of the law's impact in practice and, hence, whether it should be amended. This issue is examined on the basis of findings from a qualitative, interview-based study conducted in Israel among relatives of dying patients. The findings indicate that there are areas in which clinicians and relatives do not adhere to the law in the end-of-life decision-making process. For example, they do not always ascertain the patient's end-of-life preferences, which ignores a patient's right to autonomy and their right to make informed decisions. The apparent gaps between the actual conduct of clinicians and relatives on the one hand and the directives of the Israeli Dying Patient Act 2005 on the other, lead us to propose several changes to the Act.

Posthumous Reproduction and the Law: Tissue Transplantation, Property Rights and the Reproductive Relational Autonomy.

This paper examines the history of Australian superior court decisions on the retrieval of gametic material from deceased men. It examines the history of case law and legislation on the issue and then provides a summary of the current operative principles. The paper concludes with some reflections on the harms caused by posthumous retrieval of gametes, the role of property rights and the nature of reproductive autonomy.

Relational autonomy: lessons from COVID-19 and twentieth-century philosophy.

COVID-19 has turned many ethical principles and presuppositions upside down. More precisely, the principle of respect for autonomy has been shown to be ill suited to face the ethical challenges posed by the current health crisis. Individual wishes and choices have been subordinated to public interests. Patients have received trial therapies under extraordinary procedures of informed consent. The principle of respect for autonomy, at least in its mainstream interpretation, has been particularly questioned during this pandemic. Further reflection on the nature and value of autonomy is urgently needed. Relational autonomy has been proposed as an alternative account of autonomy that can more adequately respond to contemporary ethical issues in general and to a pandemic such as the one we are currently facing in particular. As relational autonomy is an emerging notion in current bioethics, it requires further consideration and development to be properly operationalized. This paper aims to show how six different philosophical branches--namely, philosophy of nature, philosophical anthropology, existential phenomenology, discourse ethics, hermeneutics, and cultural anthropology--have incorporated the category of relation throughout the twentieth century. We first delve into primary philosophical sources and then apply their insights to the specific field of medical ethics. Learning from the historical developments of other philosophical fields may provide illumination that will enable bioethics to experience a successful "relational turn", which has been partially initiated in contemporary bioethics but not yet achieved.

Reframing Holistic Patient Care in Nursing Homes Through the Lens of Relational Autonomy.

In nursing facilities, patient autonomy is more effective when it is reframed under the rubric of relational autonomy. Through this lens, patients, family, and staff, especially nurses, can share conversations that lead to effective decision-making that acknowledges the needs of the whole person within the nexus of the institutional setting.