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.

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.

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.

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'.

[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.

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.

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.

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.

Relational autonomy in end-of-life care ethics: a contextualized approach to real-life complexities.

BACKGROUND: Respect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to align well with patients' preferences at the end of life. The need for a more contextualized approach that meets real-life complexities experienced in end-of-life practices has been repeatedly advocated. In this regard, the notion of 'relational autonomy' may be a suitable alternative approach. Relational autonomy has even been advanced as a foundational notion of palliative care, shared decision-making, and advance-care planning. However, relational autonomy in end-of-life care is far from being clearly conceptualized or practically operationalized. MAIN BODY: Here, we develop a relational account of autonomy in end-of-life care, one based on a dialogue between lived reality and conceptual thinking. We first show that the complexities of autonomy as experienced by patients and caregivers in end-of-life practices are inadequately acknowledged. Second, we critically reflect on how engaging a notion of relational autonomy can be an adequate answer to addressing these complexities. Our proposal brings into dialogue different ethical perspectives and incorporates multidimensional, socially embedded, scalar, and temporal aspects of relational theories of autonomy. We start our reflection with a case in end-of-life care, which we use as an illustration throughout our analysis. CONCLUSION: This article develops a relational account of autonomy, which responds to major shortcomings uncovered in the mainstream interpretation of this principle and which can be applied to end-of-life care practices.

The Beneficence of Cuddle Therapy in Hyperekplexia: A Case Report.

BACKGROUND: Benevolent injustice occurs when well-intentioned treatment efforts produce an outcome that limits the potential of a patient. The unintended harm can result in significant moral distress for the family and the healthcare team. CLINICAL FINDINGS: We discussed an ethical dilemma regarding a neonate who had suspected seizure and hypoxic-ischemic encephalopathy after home birth delivery. The healthcare team experienced moral distress about the mother's desire to not use anti-seizure medications and instead trial other interventions such as cuddling. Subsequently, clinical analysis ruled out a seizure disorder. Genetic studies on this neonate confirmed hereditary hyperekplexia, which presented as exaggerated Moro reflex and apnea that mimicked seizure. INTERVENTION: We discussed how applying any one of the 4 basic ethical principles of autonomy, beneficence, nonmaleficence, or justice could counteract benevolent injustice and moral distress. OUTCOMES: Discussions with the patient's mother and nurse allowed the team to overcome their reluctance to try the mother's treatment recommendations. This resulted in adopting the seemingly counterintuitive intervention of cuddling that turned out to be effective for this neonate with hereditary hyperekplexia. PRACTICE RECOMMENDATIONS: The moral distress associated with benevolent injustice should be identified early to minimize long-term consequences to the patient, family, and healthcare team. Healthcare teams should learn to apply ethical principles when discussing patient care concerns in an unbiased manner. Guided ethical discussions allow us to be more efficient in providing family-centered care that aligns with the patient's best interest.

The Unfinished Business of Respect for Autonomy: Persons, Relationships, and Nonhuman Animals.

This essay explores three issues in respect for autonomy that pose unfinished business for the concept. By this, I mean that the dialogue over them is ongoing and essentially unresolved. These are: (1) whether we ought to respect persons or their autonomous choices; (2) the role of relational autonomy; and (3) whether nonhuman animals can be autonomous. In attending to this particular set of unfinished business, I highlight some critical moral work left aside by the concept of respect for autonomy as understood in Beauchamp and Childress' Principles of Biomedical Ethics. Specifically, while significant pragmatic traction is gained by the authors' focus on autonomous choice, carving such a focus out from the broader questions of moral respect and the autonomy of the person leaves aside a number of questions that we might have thought a view about respect for autonomy in biomedicine ought to answer. These include: How should physicians respond when autonomous patients make decisions that appear nonautonomous? What is the impact of the view that autonomy is "relational" for cross-cultural differences in how autonomy is respected? If chimpanzees (and by extension young children) can be autonomous, what does that mean for how they should be treated?

Advance care planning with chronically ill patients: A relational autonomy approach.

Advance care planning is a process that encourages people to identify their values, to reflect upon the meanings and consequences of serious illness, to define goals and preferences for future medical treatment and care, and to discuss these goals with family and health-care providers. Advance care planning is especially important for those who are chronically ill, as patients and their families face a variety of complex healthcare decisions. Participating in advance care planning has been associated with improved outcomes; yet, despite over 25 years of public awareness campaigns, research, and interventions developed to increase participation, advance care planning completion rates for people with chronic illnesses are no different than those in the general public (approximately 25%). Advance care planning has traditionally used an individualistic approach to autonomy, which puts forward an understanding of agents as independent, rational and self-interested persons. Because this individualistic approach has been largely unsuccessful in improving advance care planning uptake, a re-examination of the philosophical underpinnings of this practice and an exploration of alternative frameworks is warranted. In offering this exploration, we briefly outline two current perspectives on autonomy: the individualistic view and the relational view as articulated by feminist philosophers. Using a critical examination of the theoretical and empirical work on this topic, we argue that the individualistic view of autonomy does not sufficiently capture the relational and social complexities of the decision-making process of advance care planning. To offer a counterpoint, we examine the relational view of autonomy and suggest that this perspective is better aligned with the process of advance care planning. Specifically, we demonstrate that a relational model of autonomy is well suited to exploring advance care planning for four main reasons: (1) it recognizes the importance of relationships, (2) it reflects the fluctuating nature of autonomy in chronic illness, (3) it recognizes vulnerability, and (4) it is consonant with empirical work examining the advance care planning process.

Navigating complex end-of-life decisions in a family-centric society.

End-of-life decision making frequently involves a complex balancing of clinical, cultural, social, ethical, religious and economic considerations. Achieving a happy balance of these sometimes-competing interests, however, can be particularly fraught in a family-centric society like Singapore where the family unit often retains significant involvement in care determinations necessitating careful consideration of the family's position during the decision-making process. While various decision-making tools such as relational autonomy, best interests principle and welfare-based models have been proposed to help navigate such difficult decision-making processes, their application in practical terms, however, is dubious at best. This case report is presented to highlight these issues and explore the utility of these frameworks within the Singapore end-of-life care context when the interests of the family may be dissonant from those of the patient.

Ethical conflicts in patient relationships: Experiences of ambulance nursing students.

BACKGROUND: Working as an ambulance nurse involves facing ethically problematic situations with multi-dimensional suffering, requiring the ability to create a trustful relationship. This entails a need to be clinically trained in order to identify ethical conflicts. AIM: To describe ethical conflicts in patient relationships as experienced by ambulance nursing students during clinical studies. RESEARCH DESIGN: An exploratory and interpretative design was used to inductively analyse textual data from examinations in clinical placement courses. PARTICIPANTS: The 69 participants attended a 1-year educational programme for ambulance nurses at a Swedish university. ETHICAL CONSIDERATIONS: The research was conducted in accordance with the Declaration of Helsinki. Participants gave voluntary informed consent for this study. FINDINGS: The students encountered ethical conflicts in patient relationships when they had inadequate access to the patient's narrative. Doubts regarding patient autonomy were due to uncertainty regarding the patient's decision-making ability, which forced students to handle patient autonomy. Conflicting assessments of the patient's best interest added to the conflicts and also meant a disruption in patient focus. The absence of trustful relationships reinforced the ethical conflicts, together with an inadequacy in meeting different needs, which limited the possibility of providing proper care. DISCUSSION: Contextual circumstances add complexity to ethical conflicts regarding patient autonomy, dependency and the patient's best interest. Students felt they were fluctuating between paternalism and letting the patient choose, and were challenged by considerations regarding the patient's communication and decision-making ability, the views of third parties, and the need for prioritisation. CONCLUSION: The essence of the patient relationship is a struggle to preserve autonomy while focusing on the patient's best interest. Hence, there is a need for education and training that promotes ethical knowledge and ethical reflection focusing on the core nursing and caring values of trust and autonomy, particularly in situations that affect the patient's decision-making ability.

[The process of community building by Community Social Coordinators: The possibility of enhancing social capital in a disaster-affected city].

Objectives　To build a healthy and safe community, it is important to provide direct services, such as health, medical, and social welfare services. However, it is also crucial to enhance the community's social capital by promoting self-help and mutual aid within the community. The development and utilization of resources/networks as well as community empowerment are possible methods to enhance social capital, but there is no conclusive method to facilitate effective coordination within the community. The purpose of this study is to clarify the community building process. This is achieved through qualitative research on community social coordinators (CSCs) who worked in an area that was significantly damaged by the Great East Japan Earthquake.Methods　A qualitative approach was employed to assess 10 individuals who worked as CSCs in a city within Miyagi Prefecture. Semi-structured interviews were conducted, which were between 40-90 minutes in length. A modified grounded theory approach (M-GTA) was used to analyze the data obtained from the interviews.Results　The CSCs "built a relationship with the community," "assessed the community," and "intervened in the community." While assessing the community, they considered both its strengths and weaknesses, not limiting the fields it covered. To "solve the issues in the community," the CSCs "intervened in the community by themselves," "supported the autonomy of the residents," and "connected the residents to resources." This intervention was facilitated through "cooperation with the community" or "cooperation with other supporters."Conclusion　Three stages were observed in the community building process. First, the CSCs built a relationship with the community. They then assessed the community, and intervened as required. It was found that the intervention-which was based on the CSCs' assessment of the community's strengths and weaknesses-was facilitated by the cooperation of the community or that of other supporters. Additionally, the CSCs aimed to promote the autonomy of the residents.

It Takes a Village to Raise a Child: Solidarity in the Courts-Judicial Justification for Posthumous Use of Sperm by Bereaved Parents.

The practice of posthumous use of sperm raises social, ethical, and legal questions. We examine the issue of who should be allowed to use the sperm-only the deceased's spouse or the deceased's parents as well-from the perspective of solidarity and relational autonomy. Following a theoretical discussion of various accounts of solidarity and relational autonomy, the legal status of posthumous assisted reproduction is examined in three jurisdictions-the USA, Australia, and Israel-in which most applications to the courts were submitted by the deceased's parents. In Israel, we found fifteen court rulings on requests for posthumous use of sperm and fourteen in Australia. A smaller number were found in the case of the USA. The analysis reveals that Israeli and Australian courts employ solidarity-based arguments to justify their decisions to allow posthumous use of sperm, particularly when the deceased's true wishes are unknown. We thus conclude that the posthumous use of sperm can be legally extended to include the deceased's parents based on solidarity and relational autonomy arguments.

Relational autonomy: what does it mean and how is it used in end-of-life care? A systematic review of argument-based ethics literature.

BACKGROUND: Respect for autonomy is a key concept in contemporary bioethics and end-of-life ethics in particular. Despite this status, an individualistic interpretation of autonomy is being challenged from the perspective of different theoretical traditions. Many authors claim that the principle of respect for autonomy needs to be reconceptualised starting from a relational viewpoint. Along these lines, the notion of relational autonomy is attracting increasing attention in medical ethics. Yet, others argue that relational autonomy needs further clarification in order to be adequately operationalised for medical practice. To this end, we examined the meaning, foundations, and uses of relational autonomy in the specific literature of end-of-life care ethics. METHODS: Using PRESS and PRISMA procedures, we conducted a systematic review of argument-based ethics publications in 8 major databases of biomedical, philosophy, and theology literature that focused on relational autonomy in end-of-life care. Full articles were screened. All included articles were critically appraised, and a synthesis was produced. RESULTS: Fifty publications met our inclusion criteria. Twenty-eight articles were published in the last 5 years; publications were originating from 18 different countries. Results are organized according to: (a) an individualistic interpretation of autonomy; (b) critiques of this individualistic interpretation of autonomy; (c) relational autonomy as theoretically conceptualised; (d) relational autonomy as applied to clinical practice and moral judgment in end-of-life situations. CONCLUSIONS: Three main conclusions were reached. First, literature on relational autonomy tends to be more a 'reaction against' an individualistic interpretation of autonomy rather than be a positive concept itself. Dichotomic thinking can be overcome by a deeper development of the philosophical foundations of autonomy. Second, relational autonomy is a rich and complex concept, formulated in complementary ways from different philosophical sources. New dialogue among traditionally divergent standpoints will clarify the meaning. Third, our analysis stresses the need for dialogical developments in decision making in end-of-life situations. Integration of these three elements will likely lead to a clearer conceptualisation of relational autonomy in end-of-life care ethics. This should in turn lead to better decision-making in real-life situations.

Reconsidering the 'self' in self-management of chronic illness: Lessons from relational autonomy.

Self-management is often presented as a panacea for chronic disease care. It plays an important role at the policy level and increasingly guides the delivery of health care services. Self-management approaches to care are founded on traditional individualistic views of autonomy in which the patient is understood as being independent, rational, self-interested, and self-governing. This conceptualization of autonomy has been challenged, particularly by feminist scholars. In this paper I review predominant critiques of self-management and the traditional individualistic view of autonomy. I propose that a relational approach to autonomy, which is premised on social embeddedness and attends to social, political, and material conditions, is a more sound conception of autonomy capable of taking into consideration the complexities of illness experiences. I suggest that integrating a relational perspective of autonomy into self-management will be valuable in guiding its progression and elaborate ways in which self-management research and practice could benefit from incorporating a relational approach to autonomy.

Relational autonomy in action: Rethinking dementia and sexuality in care facilities.

BACKGROUND: Caregivers and administrators in long-term facilities have fragile moral work in caring for residents with dementia. Residents are susceptible to barriers and vulnerabilities associated with the most intimate aspects of their lives, including how they express themselves sexually. The conditions for sexual agency are directly affected by caregivers' perceptions and attitudes, as well as facility policies. OBJECTIVE: This article aims to clarify how to approach capacity determinations as it relates to sexual activity, propose how to theorize about patient autonomy in this context, and suggest some considerations for finding an ethically responsible and practically feasible way to respect the sexual rights of this population. RESEARCH DESIGN: The focus is on residents with early to moderate dementia in states of daily dependency on professional caregivers. The article critically examines existing empirical research on sexuality among persons with dementia, caregivers' attitudes, and institutional roadblocks to enabling residents' sexuality. A relational lens and insights from disability studies are used in the philosophical analysis. PARTICIPANTS AND RESEARCH CONTEXT: No research participants were part of this analysis. ETHICAL CONSIDERATIONS: This article offers a conceptual analysis and normative framework only. FINDINGS: The analysis highlights the delicate balance that capacity assessments for sexual activity have to strike; while caregivers should protect those who cannot give adequate consent, the denial of sexuality among residents can cause deep, long-ranging harms. Sexual agency features into an ongoing sense of self for many individuals with dementia, and the imposition of inappropriate standards and expectations for sexual autonomy can lead to unwarranted obstacles to sexual activity. DISCUSSION: Recommendations include developing clear and inclusive institutional policies and practices of care, providing education for caregivers on how to discuss and document residents' sexual preferences over time, and taking advantage of ethics consultation services. CONCLUSION: This analysis establishes the need for more research and discussion on this sensitive topic. Future research should investigate the specific responsibilities of caregivers in furthering the sexual interests of residents, how exactly to modify existing capacity instruments, and how best to support historically marginalized patients in their sexual identities.