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. (shrink)

Background Relational autonomy is an alternative concept of autonomy in which an individual is recognized as embedded into society and influenced by relational factors. Social context, including social location, political structure, and social forces, significantly influence an agent to develop and exercise autonomy skills. The relational approach has been applied in clinical practice to identify relational factors impacting patient autonomy and decision-making, yet there is a knowledge gap in how these factors influence the demonstration of relational autonomy in the context (...) of medical decisions of adults. Objective The present study targeted the existing knowledge of what and how relational factors impact individuals making medical decisions using the theoretical framework of relational autonomy. Methods A meta-synthesis study was utilized. Four electronic databases, including Embase, OVID Medline, CINAHL, and PubMed, were searched, along with gray literature and reference lists, to identify relevant studies. Results 23 studies reporting 21 qualitative and two mixed-method studies were reviewed. Four themes emerged from the qualitative findings: (1) supportive relationships facilitate an individual’s relational autonomy; (2) obtaining comprehensive information from broader sources helps individuals exercise relational autonomy; (3) undue family pressure impedes the exercising of patient relational autonomy; and (4) healthcare providers’ dominant voice hampers the demonstration of relational autonomy. Conclusions Applying relational autonomy to assist adults in making well-considered decisions is essential. The meta-synthesis suggests establishing a supportive relationship between individuals, healthcare providers, and family. A supportive relationship will allow healthcare providers to make judgments in line with an individual’s values and wishes with the aim of promoting relational autonomy. Advance care planning was proposed as the effective solution to obtain a consensus between individuals and their families while respecting an individual’s values and preferences. Furthermore, it is considered crucial for healthcare providers to appreciate an individual's values and incorporate their preferences into recommendations. (shrink)

Background Advance care planning (ACP) is a process in which adults engage in an ongoing dialogue about future medical treatment and care. Though ACP is recommended to improve the quality of end-of-life care, the details of the dialogue experience in ACP are unknown. Objective To explore participants’ experiences of dialogue in an ACP educational program that encouraged them to discuss the value of a way of life. Research design This qualitative descriptive study used the focus group interview method. Data were (...) analyzed using qualitative content analysis. Participants and research context A dialogue-based ACP educational program was conducted in four regions in Japan for local citizens to discuss the value of their way of life. A total of 66 individuals (mean age = 55.5 ± 17.2 years; 50 women and 16 men) participated in focus group interviews. Ethical considerations This study was approved by the Ethical Review Committee of Tokyo Women’s Medical University (no. 4723) and Kyoto University (no. R2099). Findings Five main themes were extracted: discussing one’s thoughts with others in a considerate manner, reflecting on one’s way of life through others, feeling a sense of connection with others through storytelling, realizing the difficulties of talking about “what if” topics, and turning one’s eyes toward the future through the dialogue. These themes were interrelated and illustrated the complexity of the experience of discussing values. Conclusions The results suggest that dialogue in ACP is useful in clarifying values. They also indicated the need for dealing with the ethical challenges of discussing value and the importance of caring for the interlocutor to have a safe dialogue. In the ACP process, safety in dialogue may improve readiness in ACP, and health practitioners who support ACP need to address the ethical challenges entailing dialogue about values. (shrink)

Background: Enhancing client autonomy requires close coordination of interactional practices between nurse and client, which can cause challenges when interaction takes place in video-mediated settings. While video-mediated services have become more common, it remains unclear how they shape client autonomy in telehomecare. Research aim: To analyse how video mediation shapes client autonomy when nurses guide medicine taking remotely through video-mediated home care. Research design: This is a conversation analytic case study using video recordings of telehomecare encounters. The theoretical approach draws (...) on ethnomethodology and empirical ethics. Participants and research context: Four home-dwelling older adults and three nurses participated in the data collection; data extracts include one client and two nurses. The study was conducted in Finland. Ethical considerations: Special attention was given to protect the rights of home care clients. An ethical statement for the study was given by the Ethics Committee of the Tampere Region Findings: Video mediation complicates interacting remotely with care-relevant artefacts because of nurses’ limited visual access to the medicine and client’s need to simultaneously engage in vocal interaction and medicine taking. This can be overcome by dividing the guidance into manageable steps which invite the client to explicate their readiness to take the medicine and situating the video-mediation equipment and medicine close together. Different interactional practices and ways of situating video-mediation equipment and medicine have consequences for client autonomy. Discussion: Understanding client autonomy in digitalised settings demands empirical examination that recognises the importance of different human and non-human aspects of care that shape client autonomy. Conclusions: To harness the benefits of video-mediated home care, communication technologies’ reliance on home space and interactional practices should be recognised. Empirical ethics research is needed in order to make normative suggestions that fit a wide variety of care situation. (shrink)

BackgroundRespect 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 bodyHere, 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.ConclusionThis 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. (shrink)

Background A team-based approach has been advocated for advance care planning in nursing homes. While nurses are often put forward to take the lead, it is not clear to what extent other professions could be involved as well. Objectives To examine to what extent engagement in advance care planning practices, knowledge and self-efficacy differ between nurses, care assistants and allied care staff in nursing homes. Design Survey study. Participants/setting The study involved a purposive sample of 14 nursing homes in Flanders, (...) Belgium. Nurses, care assistants and allied care staff completed a survey. Ethical considerations The study was approved by the University Hospital of Brussels, as part of a cluster randomized controlled trial. Results One hundred ninety-six nurses, 319 care assistants and 169 allied staff participated. After adjusting for confounders, nurses were significantly more likely than care assistants to have carried out advance care planning conversations and documented advance care planning ; differences not found between allied staff and care assistants. Advance care planning knowledge total scores differed significantly, with nurses ; 95% confidence interval 0.08–0.17; p < 0.001) and allied staff scoring higher than care assistants. We found no significant differences regarding self-efficacy. Discussion While nursing home nurses conducted more advance care planning conversations and documentation than allied care staff and care assistants, these two professional groups may be a valuable support to nurses in conducting advance care planning, if provided with additional training. Conclusions Allied care staff and care assistants, if trained appropriately, can be involved more strongly in advance care planning to enhance relational and individual autonomy of nursing home residents, alongside nurses. Future research to improve and implement advance care planning should consider this finding at the intervention development stage. (shrink)