Fostering relational autonomy in end-of-life care: a procedural approach and three-dimensional decision-making model.

Respect for patient autonomy is paramount in resolving ethical tensions in end-of-life care. The concept of relational autonomy has contributed to this debate; however, scholars often use this concept in a fragmented manner. This leads to partial answers on ascertaining patients' true wishes, meaningfully engaging patients' significant others, balancing interests among patients and significant others, and determining clinicians' obligations to change patients' unconventional convictions to enhance patient autonomy. A satisfactory solution based on relational autonomy must incorporate patients' competence (apart from decisional capacity), authenticity (their true desires or beliefs) and the involvement level of their significant others. To that end, we argue that John Christman's procedural approach to relational autonomy provides critical insights, such as the diachronic or socio-historical personhood, sustained critical reflection and his recent explication of the nature of asymmetrical relationships and helpful interlocutors. This study reviews Christman's account, proposes minor modifications and advocates for an integrated three-dimensional model for medical decision-making. Clarifying the relationship among the three elements promotes an ethical framework with a coherent understanding of relational autonomy. This model not only provides a descriptive and normative framework for end-of-life care practice but also reconsiders the nature of the clinician-patient relationship and its normative implications. We further present a case study to illustrate the merits of our proposed model. Altogether, our proposal will help navigate complex medical decision-making, foster trust and negotiate shared values between patients and their significant others, particularly in end-of-life care.

Factors Contributing to Non-Concordance Between End-of-Life Care and Advance Care Planning.

CONTEXT: Despite making do-not-resuscitate or comfort care decisions during advance care planning, terminally ill patients sometimes receive life-sustaining treatments as they approach end of life. OBJECTIVES: To examine factors contributing to nonconcordance between end-of-life care and advance care planning. METHODS: In this longitudinal retrospective cohort study, terminally ill patients with a life expectancy shorter than six months, who had previously expressed a preference for do-not-resuscitate or comfort care, were followed up after palliative shared care intervention. An instrument with eight items contributing to non-concordant care, developed through literature review and experts' consensus, was employed. An expert panel reviewed electronic medical records to determine factors associated with non-concordant care for each patient. Statistical analysis, including descriptive statistics and the chi-square test, examines demographic characteristics, and associations. RESULTS: Among the enrolled 7871 patients, 97 (1.2%) received non-concordant care. The most prevalent factor was "families being too distressed about the patient's deteriorating condition and therefore being unable to let go" (84.5%) followed by "limited understanding of medical interventions among patients and surrogates" (38.1%), and "lack of patient participation in the decision-making process" (25.8%). CONCLUSIONS: This study reveals that factors related to relational autonomy, emotional support, and health literacy may contribute to non-concordance between advance care planning and end-of-life care. In the future, developing an advance care planning model emphasizes respecting relational autonomy, providing emotional support, and enhancing health literacy could help patients receiving a goal concordant and holistic end-of-life care.

"The Patient Is Being Pressured!" Coercion Versus Relational Autonomy.

Relational autonomy is a concept that describes the interdependent nature of decision making by individuals. Relational autonomy is distinct from the traditional concept of autonomy, which asserts the need for each individual to make choices based on their own values and without influence by others. We present a case in which a patient made decisions that appeared contrary to his own desires. The case raises questions about the line between appropriate and coercive family influence. We also explore the moral distress generated by the attempt to reconcile his expressed desires and the decisions he made. We propose that examining the case with a relational autonomy lens may have helped clinical staff understand his decision and thus mitigate moral distress.

Factors impacting the demonstration of relational autonomy in medical decision-making: A meta-synthesis.

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.

Ethics Guideline Development for Neuroscience Research involving Patients with Mental Illness in Japan.

This study aims to develop guidelines of key concepts and specific considerations to make the research more ethical when conducting neurological examinations and treatment interventions in mentally ill patients. We analyzed guideline development theory and literature, previous issues, and discussions with specialists of philosophy, medicine, sociology, and bioethics. The selection of research participants, drafting of intervention plans, and informed consent process were examined with reference to the dual burden; the minimal risk as a general rule of ethical allowance levels, assent and dissent to assess the individual's judgment capacity for consent, relational autonomy for personal consent with assistance by the proxy, and risk/benefit assessments. When conducting studies, this guideline requires that these three processes be set up appropriately on a case-by-case basis. Supplementary Information: The online version contains supplementary material available at 10.1007/s41649-023-00240-x.

Providing Emotional Support and Physical Comfort During a Time of Social Distancing: A Thematic Analysis of Doulas' Experiences During the Coronavirus Pandemic.

Doulas are trained, non-clinical professionals that provide a continuum of support for mothers. An interpretive phenomenological approach was used to explore the professional experiences of doulas (n = 17) during the COVID-19 pandemic in the US. Data were collected using brief intake surveys, in-depth semi-structured interviews, and an online discussion group. After a list of significant statements was created and grouped during emergent themes analysis, the reflections were summarized into three themes, (1) Doula Resilience, (2) Experiencing Vulnerability, and (3) Concern for Client Vulnerability that encapsulate the experiences of doulas during the COVID-19 pandemic. We conclude that as part of the COVID-19 recovery process, policy makers should look to non-clinical interventions for improving maternal health, such as promoting and supporting synergy between doulas and other maternal health service providers.

Parental agency in pediatric palliative care.

The study discusses a new approach to parental agency in pediatric palliative care based on an active form of caregiving. It also explores the possibility of a positive conceptualization of parental agency in its relational context. The paper begins with an illustrative case study based on a clinical situation. This is followed by an analysis of various aspects of parental agency based on empirical studies that disclose the insufficiencies of the traditional approach to parental agency. In the next step, parental agency is analyzed from a reality-based perspective as an activity focused on relationships and the cognitive capacity of parents vis-a-vis their seriously ill children. The paper also considers the importance of the cultural and social contexts in which parental agency and decision-making take place. This agency is addressed not as individualistic in form, and nor is it exercised in terms of fixed choices. Rather, the focus is on its dynamic and future-oriented aspects. Consequently, parental agency should be comprehended not only as a form of proxy agency representing the child's best interests but also as a complex decision-making process in which the parents learn from their child how to become good, compassionate caregivers and at the same time good parents.

Advance Care Planning in Spain.

In the last decade in Spain, an important push has been given to the development of health policies that define the framework of action in the care of people with advanced chronic diseases. Respect for the autonomy of the patient, shared decision-making processes and advance care planning (ACP) are recognized into health plans as a key aspect in chronic care, frailty, and palliative care. A few but significant number of institutions, local governments, and healthcare professionals from different regions of Spain have started a rationale and roadmap for a new twist in Spain's theoretical, ethical and policy development, promoting ACP implementation into public health care systems. In 2020, a working group founded in 2017, evolved into the "Spanish Association of Shared Care Planning" (AEPCA). The Shared Care Planning (SCP) concept grows up after the two international consensus Delphi studies in 2017 and pretends to shift from the framework of ACP programs to a person-centred care approach. In the last years, several experiences show how professionals are more sensible and interested on the ACP process, but it cannot be said, for now, that it has taken effect in the global Spanish health system. Even both ACP and SCP are being used simultaneously in Spain, each day more people and autonomous communities embrace renewed concept and foundations of SCP, supporting the work of AEPCA on spreading the value of this process into the care of people who are coping with chronic diseases, vulnerability, and frailty.

Real-world experience implementing Advance Care Planning in the Asia-Pacific: ACP in Japan.

Promoting Advance Care Planning (ACP) in the super-aged society of Japan has become increasingly important for supporting older adults to continue to live in the community until the end of life. To promote ACP further in Japan, Japanese family-centered decision-making and high-context culture need to be taken into account. Therefore, we describe the environmental and historical backgrounds surrounding ACP in Japan, and based on the results, introduce research and education programs regarding its implementation.

Relational approaches in bioethics: A guide to their differences.

Contemporary critical approaches to bioethics increasingly present themselves as "relational," though the meaning of relationality and its implications for bioethics seem to be many and varying. I argue that this confusion is due to a multiplicity of relational approaches originating from distinct theoretical lineages. In this article, I identify four key differences among commonly referenced relational approaches: the scope and nature of relationships considered, the extent of the determining influence on individual selfhood, and the integrity of individual selfhood. Importantly, these four differences carry consequences for the usage of relational approaches within academic and clinical bioethics. I show that these differences attach to multiple objects of critique within mainstream bioethics and imply distinct metaethical commitments. Although I issue a cautionary note about combining relational approaches from distinct lineages, I close by suggesting that many such approaches may have their use, drawing on Susan Sherwin's sense of bioethical theories as lenses.

Women's autonomy for managing labour pain in a relational context: An interpretive description study.

AIM: To describe how women perceived relational autonomy for decision-making during childbirth pain and illuminate influencing factors. BACKGROUND: Most women report challenging pain during birth. Circumstances can affect their ability to engage in pain management decisions. DESIGN: We used an interpretative description approach to conduct this study. METHOD: A purposive sample of ten women who reported pain during childbirth participated in semi-structured interviews. The study was conducted between July 2019 and November 2020 and reported according to the COREQ checklist. RESULTS: Circumstances during childbirth, such as women's expectations and relationships, influenced their efforts to engage in relational autonomy. Care providers dealt with the unpredictability of childbirth and challenges with pain management using decision-making practices that could disrupt women's expectations, undermine women's trust, demonstrate disrespect for women and rely on inadequate communication. Women who felt dependent on others were less likely to participate in decision-making. When care providers' perceptions about pain differed from women's reports of pain, participants became distressed because care providers did not acknowledge their subjective pain experiences. CONCLUSIONS: Women regarded their relationships and communication with care providers as foundational to relational autonomy in decision-making about pain management during childbirth. RELEVANCE TO CLINICAL PRACTICE: Study findings can support care providers' considerations of the complexity of childbirth pain and factors affecting women's relational autonomy in decision-making about pain. In particular, the findings highlight the importance of women's expectations and care providers' recognition of women's experiences of pain. PATIENT OR PUBLIC CONTRIBUTION: Women who shared their stories of childbirth pain contributed to the data collected. The chief nursing officers in the data collection setting facilitated the recruitment and data collection.

Patient and therapist perspectives on physical therapy outcome measures and engagement after stroke: A case study.

BACKGROUND: Outcome measures are highly recommended in stroke physical therapy, however, most of the existing research has been performed from the provider perspective. Understanding the patient perspective of outcome measures in conjunction with the therapist perspective may help to better support patient engagement and autonomy. PURPOSE: The purpose of this study was to explore patient and therapist perspectives on physical therapy outcome measures post-stroke. METHODS: This qualitative case study of a Canadian rehabilitation facility is based on patient-oriented research principles, with three patient partners embedded in the research team. Data collection included chart reviews, observations of physical therapy sessions, patient interviews, and therapist interviews. Field notes of observations and interview transcripts were analyzed using thematic analysis. RESULTS: Ten patients and seven therapists participated. Analysis revealed the following two themes: 1) tracking progress; and 2) partnership. Tracking progress included the expectations patients had for improvement, the importance of objectively measuring change and the functional improvement observed day by day. Partnership described the relationship between therapist and patient including communication, encouragement and affirmation, the therapist as expert and the gradual shift in autonomy from therapist to patient. CONCLUSION: Patients valued the objective results of outcome measures and were encouraged by measurable changes. Maximizing the use of physical therapy outcome measures may improve patient engagement and support relational autonomy.

Is the Cure Worse than the Disease? The Ethics of Imposing Risk in Public Health.

Efforts to improve public health, both in the context of infectious diseases and non-communicable diseases, will often consist of measures that confer risk on some persons to bring about benefits to those same people or others. Still, it is unclear what exactly justifies implementing such measures that impose risk on some people and not others in the context of public health. Herein, we build on existing autonomy-based accounts of ethical risk imposition by arguing that considerations of imposing risk in public health should be centered on a relational autonomy and relational justice approach. Doing so better captures what makes some risk permissible and others not by exploring the importance of power and context in such deliberations. We conclude the paper by applying a relational account of risk imposition in the cases of (a) COVID-19 measures and (b) the regulation of sugar-sweetened beverages to illustrate its explanatory power.

Reproductive autonomy associated with the use of contraceptive methods among reproductive aged women / Autonomía reproductiva asociada al uso de métodos anticonceptivos en mujeres en edad reproductiva / Autonomia reprodutiva associada ao uso de métodos contraceptivos entre mulheres em idade reprodutiva

ABSTRACT Objective: To assess the sociodemographic aspects associated with reproductive autonomy among urban women, with special regard to the relationship with the use of contraceptive methods. Method: Cross-sectional study with 1252 women, conducted between April and June 2021, using the Brazilian version of the Reproductive Autonomy Scale. Data were analyzed using multiple linear regression. Results: Mean scores for the subscales were 2.5 (SD=0.3) (Decision-making), 3.8 (SD=0.3) (Absence of Coercion) and 3.6 (SD=0.4) (Communication). Compared to women who reported no use of contraceptive methods, women using barrier or behavioral methods and those using LARC had higher level of reproductive autonomy on all dimensions of the Scale (p<0.001). Other aspects associated with reproductive autonomy were education, race/ethnicity, religion, socioeconomic status and cohabitation living with a partner, depending on each subscale. Conclusion: The type of contraceptive method used was statistically associated with reproductive autonomy in all subscales.

RESUMEN Objetivo: Verificar los aspectos sociodemográficos asociados a la autonomía reproductiva entre mujeres urbanas, especialmente en relación al uso de métodos anticonceptivos. Método: Estudio transversal realizado con 1252 mujeres, entre abril y junio de 2021, utilizando la versión brasileña de la Escala de Autonomía Reproductiva. Los datos se analizaron mediante regresión lineal múltiple. Resultados: Las puntuaciones medias de las subescalas fueron 2,5 (DE=0,3) (Toma de decisiones), 3,8 (DE=0,3) (Ausencia de coerción) y 3,6 (DE=0,4) (Comunicación). En comparación con las mujeres que informaron no usar métodos anticonceptivos, las mujeres que usaron métodos de barrera o conductuales y las que usaron LARC mostraron un mayor nivel de autonomía reproductiva en todas las dimensiones de la Escala (p<0,001). Otros aspectos asociados a la autonomía reproductiva fueron la educación, la raza/color, la religión, el grupo socioeconómico y la convivencia, según cada subescala. Conclusión: El tipo de método anticonceptivo utilizado se asoció estadísticamente con la autonomía reproductiva en todas las subescalas.

RESUMO Objetivo: Verificar os aspectos sociodemográficos associados à autonomia reprodutiva entre mulheres urbanas, em especial na relação com o uso de métodos contraceptivos. Método: Estudo transversal realizado com 1252 mulheres, entre abril e junho de 2021, utilizando a versão brasileira da Escala de Autonomia Reprodutiva. Os dados foram analisados por meio de regressão linear múltipla. Resultados: Os escores médios das subesacalas foram 2,5 (dp=0,3) (Tomada de decisão), 3,8 (dp=0,3) (Ausência de Coerção) e 3,6 (dp=0,4) (Comunicação). Comparadas às mulheres que relataram não usar métodos contraceptivos, mulheres que usavam métodos de barreira ou comportamentais e as que usavam LARC mostraram maior nível de autonomia reprodutiva em todas as dimensões da Escala (p<0,001). Outros aspectos associados à autonomia reprodutiva foram a escolaridade, raça/cor, religião, grupo socioeconômico e morar com o parceiro,a depender de cada subescala. Conclusão: O tipo de método contraceptivo utilizado foi estatisticamente associado à autonomia reprodutiva em todas as subescalas.

Perspectivas feministas para la Bioética

Propósito/Contexto. El artículo hace un recorrido por conceptos centrales de propuestas feministas contemporáneas para ofrecer análisis filosóficos, epistemológicos y políticos, útiles para la fundamentación y la práctica de la Bioética contemporánea. Se busca profundizar y problematizar conceptos centrales de teorías bioéticas como autonomía, justicia y vulnerabilidad, desde una perspectiva anclada en una comprensión de los fenómenos sociales y las subjetividades como inmersas en un entramado complejo de estructuras de poder. Metodología/Enfoque. El texto se formula desde una perspectiva filosófica y analítica que construye un hilado de conceptos y categorías para la revisión y el enriquecimiento de algunos fundamentos de la Bioética contemporánea. Se acude a fuentes diversas de teorías feministas, teorías filosóficas y propuestas políticas para la construcción de una manera de situarse epistemológica y políticamente frente a los problemas bioéticos de la llamada perspectiva feminista. Resultados/Hallazgos. Se propone que la adopción de una perspectiva feminista para la Bioética se entienda no como el conjunto reducido de problemas de las mujeres, ni como simple inclusión de mujeres en las discusiones bioéticas, sino como la adopción de una manera de situar, observar y analizar fenómenos sociales y problemas bioéticos desde una comprensión de las causas estructurales de las opresiones, que conciba al género, la raza, la clase social, la orientación sexual, la discapacidad y otros ejes de diferencia, como categorías de análisis centrales. Discusión/Conclusiones/Contribuciones. La adopción de una perspectiva feminista implica una revisión crítica de los fundamentos del campo, particularmente del principialismo como versión más difundida, haciendo visibles algunas de sus limitaciones y consecuencias problemáticas. Asimismo, lleva a una revisión epistemológica de los saberes involucrados en el campo y a sus prácticas deliberativas, señalando la importancia de atender a las condiciones que impiden o dificultan el cumplimiento del compromiso político de la Bioética como espacio pluralista y transformador de las sociedades.

Purpose/Context. The article reviews central concepts of contemporary feminist proposals in order to offer philosophical, epistemological and political analyses useful for the foundation and practice of contemporary bioethics. It seeks to deepen and problematize central concepts of bioethical theories such as autonomy, justice and vulnerability from a perspective anchored in an understanding of social phenomena and subjectivities as immersed in a complex web of power structures. Methodology/Approach. The text is formulated from a philosophical and analytical perspective that builds a thread of concepts and categories for the revision and enrichment of some fundamentals of contemporary bioethics. Diverse sources of feminist theories, philosophical theories and political proposals are used to construct a way of situating oneself epistemologically and politically in the face of the bioethical problems of the so-called feminist perspective. Results/Findings. It is proposed that the adoption of a feminist perspective for bioethics should be understood not as a reduced set of women's problems, nor as a simple inclusion of women in bioethical discussions, but as the adoption of a way of situating, observing and analyzing social phenomena and bioethical problems from an understanding of the structural causes of oppressions, which conceives gender, race, social class, sexual orientation, disability and other axes of difference, as central categories of analysis. Discussion/Conclusions/Contributions. The adoption of a feminist perspective implies a critical review of the foundations of the field, particularly of principlism as the most widespread version, making visible some of its limitations and problematic consequences. It also leads to an epistemological review of the knowledge involved in the field and its deliberative practices, pointing out the importance of addressing the conditions that prevent or hinder the fulfillment of the political commitment of bioethics as a pluralistic and transformative space for societies.

Finalidade/Contexto. O artigo revê conceitos centrais das propostas feministas contemporâneas a fim de oferecer análises filosóficas, epistemológicas e políticas que são úteis para a fundação e prática da bioética contemporânea. Procura aprofundar e problematizar conceitos centrais de teorias bioéticas tais como autonomia, justiça e vulnerabilidade numa perspectiva ancorada numa compreensão dos fenómenos sociais e subjectividades como imersos numa teia complexa de estruturas de poder. Metodologia/Aproximação. O texto é formulado de uma perspectiva filosófica e analítica que constrói um fio de conceitos e categorias para a revisão e enriquecimento de alguns dos fundamentos da bioética contemporânea. Diversas fontes de teorias feministas, teorias filosóficas e propostas políticas são utilizadas para construir uma forma de se situar epistemologicamente e politicamente face aos problemas bioéticos da chamada perspectiva feminista. Resultados/Findings. Propõe-se que a adopção de uma perspectiva feminista da bioética não deve ser entendida como um conjunto reduzido de problemas das mulheres, nem como uma simples inclusão das mulheres nas discussões bioéticas, mas como a adopção de uma forma de situar, observar e analisar os fenómenos sociais e os problemas bioéticos a partir de uma compreensão das causas estruturais das opressões, que concebe o género, raça, classe social, orientação sexual, deficiência e outros eixos de diferença como categorias centrais de análise. Discussão/Conclusões/Contribuições. A adopção de uma perspectiva feminista implica uma revisão crítica dos fundamentos do campo, particularmente do principlismo como a versão mais difundida, tornando visíveis algumas das suas limitações e consequências problemáticas. Conduz também a uma revisão epistemológica dos conhecimentos envolvidos no campo e das suas práticas deliberativas, salientando a importância de abordar as condições que impedem ou dificultam o cumprimento do compromisso político da bioética como um espaço pluralista e transformador para as sociedades.

Experiences of healthcare providers with eligible patients' loss of decision-making capacity while awaiting medical assistance in dying.

Background: In Canada, under Bill C-14, patients who met all eligibility requirements were prevented from accessing medical assistance in dying (MAiD) following their loss of decision-making capacity while awaiting MAiD. The changes introduced with Bill C-7 continue to limit access to patients who did not enter a waiver of final consent agreement with their healthcare providers. Little is known about the experiences with patients' loss of capacity to consent and subsequent ineligibility for MAiD. Understanding healthcare providers' experiences has important implications for improving end-of-life care for those with capacity-limiting conditions. Purpose: To explore Canadian healthcare providers' experiences with end-of-life of eligible patients who became ineligible for MAiD due to their loss of decision-making capacity to consent and the relational influences on their experiences prior to the implementation of Bill C-7 in Canada. Method: A critical qualitative methodology and a feminist ethics theoretical lens guided this study. A voice-centred relational approach that allowed an in-depth exploration of how power, relationality and moral agency influenced participants' experiences was used for data analysis. Data consisted of semi-structured interviews with 30 healthcare providers. Findings: The analysis resulted in the following four main themes and corresponding subthemes: (1) identifying factors that may result in ineligibility for MAiD due to capacity loss; (2) maintaining eligibility required to access MAiD; (3) preparing for an alternative end-of-life; (4) experiencing patients' capacity loss. Discussion: This study highlights that while MAiD is legally available to eligible Canadians, access to MAiD and care for eligible patients who were unable to access MAiD due to their loss of decision-making varied based on the geographical locations and access to willing MAiD and end-of-life care providers. The availability of high-quality palliative care for patients throughout the MAiD process, including following the loss of capacity to consent and subsequent ineligibility, would improve the end-of-life experience for all those involved. The need to establish a systematic approach to prepare and care for patients and their families following the patients' loss of capacity and subsequent ineligibility for MAiD is also identified.

From the challenge of assessing autonomy to the instruments used in practice: A scoping review.

Autonomy is one of the essential components to live a quality life. Monitoring this autonomy is, in effect, essential, to allow the nurses to conceive, implement and evaluate interventions aimed at its promotion or even maintenance. For this reason, this scoping review aims to map the evidence to identify and analyze the instruments used to assess the person's autonomy, which emerges from scientific production. Methods: Scoping review based on the recommended principles by the Joanna Briggs Institute. The research was realized in the databases: Scopus (excluding MEDLINE), CINAHL complete (via EBSCO, Excluding MEDLINE), and MEDLINE (via PubMed). Two independent reviewers evaluated the articles' pertinence for the study's investigation, the extraction, and synthesis of articles. Results: After the analysis, according to the inclusion criteria established, 34 articles were selected, allude to 7 different instruments to assess autonomy. Conclusions: The need for further development at this level is highlighted, namely through the construction and validation of more comprehensive instruments, integrating the different components of the concept of autonomy.

Culturally Adapted Consensus Definition and Action Guideline: Japan's Advance Care Planning.

CONTEXT: A conceptual framework for advance care planning is lacking in societies like Japan's valuing family-centered decision-making. OBJECTIVES: A consensus definition of advance care planning with action guideline adapted to Japanese society. METHODS: We conducted a multidisciplinary modified Delphi study 2020-2022. Thirty physicians, 10 healthcare and bioethics researchers, six nurses, three patient care managers, three medical social workers, three law experts, and a chaplain evaluated, in 7 rounds (including two web-based surveys where the consensus level was defined as ratings by ≥70% of panelists of 7-9 on a nine-point Likert scale), brief sentences delineating the definition, scope, subjects, and action guideline for advance care planning in Japan. RESULTS: The resulting 29-item set attained the target consensus level, with 72%-96% of item ratings 7-9. Advance care planning was defined as "an individual's thinking about and discussing with their family and other people close to them, with the support as necessary of healthcare providers who have established a trusting relationship with them, preparations for the future, including the way of life and medical treatment and care that they wish to have in the future." This definition/action guideline specifically included support for individuals hesitant to express opinions to develop and express preparations for the future. CONCLUSION: Adaptation of advance care planning to Japanese culture by consciously enhancing and supporting individuals' autonomous decision-making may facilitate its spread and establishment in Japan and other societies with family-centered decision-making cultures.

[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.

"If relatives inherited the gene, they should inherit the data." Bringing the family into the room where bioethics happens.

Biological kin share up to half of their genetic material, including predisposition to disease. Thus, variants of clinical significance identified in each individual's genome can implicate an exponential number of relatives at potential risk. This has renewed the dilemma over family access to research participant's genetic results, since prevailing U.S. practices treat these as private, controlled by the individual. These individual-based ethics contrast with the family-based ethics- in which genetic information, privacy, and autonomy are considered to be familial- endorsed in UK genomic medicine and by participants in a multi-method study of U.S. research participants presented here. The dilemma reflects a conflict between U.S. legal and ethical frameworks that privilege "the individual" and exclude "the family" versus actual human genetics that are simultaneously individual and familial. Can human genetics succeed in challenging bioethics' hegemonic individualism to recognize and place the family at the center of the room where bioethics happens?