Factors Associated With Distress Related to Perceived Dignity in Patients With Rheumatic Diseases.

BACKGROUND: The loss of perceived dignity is an existential source of human suffering, described in patients with cancer and chronic diseases and hospitalized patients but rarely explored among patients with rheumatic diseases (RMDs). We recently observed that distress related to perceived dignity (DPD) was present in 26.9% of Mexican patients with different RMDs. The study aimed to investigate the factors associated with DPD. METHODS: This cross-sectional study was performed between February and September 2022. Consecutive patients with RMDs completed patient-reported outcomes (to assess mental health, disease activity/severity, disability, fatigue, quality of life [QoL], satisfaction with medical care, and family function) and had a rheumatic evaluation to assess disease activity status and comorbidity. Sociodemographic variables and disease-related and treatment-related variables were retrieved with standardized formats. DPD was defined based on the Patient Dignity Inventory score. Multivariate regression analysis was used. RESULTS: Four hundred patients were included and were representative of outpatients with RMDs, while 7.5% each were inpatients and patients from the emergency care unit. There were 107 patients (26.8%) with DPD. Past mental health-related comorbidity (Odds Ratio [OR]: 4.680 [95% Confidence Interval [CI]: 1.906-11.491]), the number of immunosuppressive drugs/patient (OR: 1.683 [95% CI: 1.015-2.791]), the physical health dimension score of the World Health Organization Quality of Life-Brief questionnaire (WHOQOL-BREF) (OR: 0.937 [95% CI: 0.907-0.967]), and the emotional health dimension score of the WHOQOL-BREF (OR: 0.895 [95% CI: 0.863-0.928]) were associated with DPD. CONCLUSIONS: DPD was present in a substantial proportion of patients with RMDs and was associated with mental health-related comorbidity, disease activity/severity-related variables, and the patient QoL.

A Systematic Scoping Review on Dignity Assessment Tools.

CONTEXT: The provision of person-centered dignity-conserving care is central to palliative care. It is important to reevaluate current methods of assessing dignity as the concept of dignity is multifaceted. OBJECTIVES: The aim of this study is to understand the tools which are used to assess a patient's dignity and the elements of dignity evaluated in these tools. METHODS: Two independent and concurrent Systematic Evidence-Based Approach guided systematic scoping reviews (SSR in SEBA) on existing dignity assessment tools and on accounts of assessments of dignity were carried out. The SSR in SEBA on dignity assessment tools involving PubMed, Embase, PsycINFO, Cochrane Database of Systematic Reviews, Scopus, and CINAHL databases saw 22 full-text articles included from the 645 articles reviewed. The SSR in SEBA on accounts of assessments of dignity featured in the PubMed database identified 102 full-text articles which saw 46 articles included. RESULTS: The domains identified were factors affecting patients' definition of dignity; elements of dignity-conserving care; and components of effective tools. CONCLUSION: Current accounts to assess dignity and assessment tools fail to capture shifting self-concepts of dignity holistically. A portfolio-like appraisal of dignity is proposed to achieve assessments that are timely, longitudinal, and patient-specific. Portfolio-based assessments by members of the multidisciplinary team will better direct timely evaluations of relevant aspects of changing concepts of dignity, without losing the patient's holistic perception of dignity.

Threats to personhood from within the family? A study of family caregivers of people with dementia in the Chinese context.

BACKGROUND AND OBJECTIVES: Dementia care creates ethical and legal dilemmas due to the struggle to balance the quality of care and personhood. Disagreement and conflict in caregiving relationships are common. However, limited attention has been given to particular stressful circumstances, such as care practice and decision disagreements. Moreover, the cultural context of personhood has been overlooked. This study drew on Hong Kong family caregivers' reports of their cargiving practice and disagreements with care recipients about care-related decisions and their implications for personhood to identify person-centered family care support needs. RESEARCH DESIGN AND METHODS: We conducted 18 semi-structured interviews with family caregivers of people with dementia in Hong Kong, China. Participants were asked to share their family dementia caregiving experience and practice, specifically regarding decisions and practices that elicited disagreement. We used thematic analysis to analyze data generated from interviews. RESULTS: Six caregiver practices were identified: exchange for mutual agreement, a foot-in-the-door approach, acceptance of requests/behaviors contrary to the caregivers' views, infantilization, treachery, and exclusion and imposition. DISCUSSION AND IMPLICATIONS: These findings highlight the importance of providing support and guidelines for person-centered care to promote personhood in the family caregiving context in dementia care.

Organizational narratives in rehabilitation-focused dementia care - Negotiating identities, interventions and personhood.

BACKGROUND: Rehabilitation is increasingly being introduced in dementia care but studies highlight extensive heterogeneity in practices, conceptual confusion and divergent perceptions of its relevance across care organizations and national contexts. As this have implications for development of dementia care as well as for people with dementia's access to care it is important to study the organizational narratives and practices in rehabilitation-oriented dementia care organizations. METHODS: The study build on qualitative interviews (individual and group interviews) with health professionals (N = 26) engaged with dementia care and rehabilitation in two Danish municipalities. The interviews were conducted in 2018-2019. The empirical data was analyzed using abductive analysis and theory-based narrative analysis, using Loseke's conceptualizations of and approach to analyzing formula stories. FINDINGS: Four dominant organizational narratives were constructed from the data. Each narrative produced a specific organizational narrative of client identity: the active participant in individualized rehabilitation, the inactive individual benefitting from enhanced social environments, the disengaging self and the vulnerable self. CONCLUSION: Introducing rehabilitation in dementia care may amplify the organizational polyphonic and provide a plurality of organizational identities each expressing different perceptions of personhood and agency for people with dementia. The organizational narratives were negotiated within a specific structural context where national regulation and dominant discourses on economic challenges and ageing gave precedence to some narratives more than others. In Danish elder care, the first narrative is the most influential but risks excluding people with dementia. Instead, rehabilitation in dementia care is positioned within a social and relational perspective, which may silence important discussion of agency and resistance.

A Systematic Review of Stakeholder Perspectives of Dignity and Assisted Dying.

INTRODUCTION: The debate on assisted dying and its components, euthanasia and physician-assisted suicide has evolved with the emergence of the right to dignity and the wish to hasten death (WTHD). Whilst shaped by local legal and sociocultural considerations, appreciation of how patients, healthcare professionals and lawmakers relate notions of dignity to self-concepts of personhood and the desire for assisted dying will better inform and direct support of patients. METHODS: Guided by the Systematic Evidence Based Approach, a systematic scoping review (SSR in SEBA) on perspectives of dignity, WTHD and personhood featured in PubMed, Embase, PsycINFO, Cochrane Database of Systematic Reviews, CINAHL, Scopus databases and four key Palliative Care journals was conducted. The review hinged on the following questions: "what is the relationship between dignity and the wish to hasten death (WTHD) in the assisted dying debate?", "how is dignity conceptualised by patients with WTHD?" and "what are prevailing perspectives on the role of assisted dying in maintaining a dying patient's dignity?" RESULTS: 6947 abstracts were identified, 663 full text articles reviewed, and 88 articles included. The four domains identified include 1) concepts of dignity through the lens of the Ring Theory of Personhood (RToP) including their various definitions and descriptions; 2) the relationship between dignity, WTHD and assisted dying with loss of dignity and autonomy foregrounded; 3) stakeholder perspectives for and against assisted dying including those of patient, healthcare provider and lawmaker; and 4) other dignity-conserving measures as alternatives to assisted dying. CONCLUSION: Concepts of dignity constantly evolve throughout the patient's end of life journey. Understanding when and how these concepts of personhood change and trigger the fear of a loss of dignity or intractable suffering could direct timely, individualised and appropriate person-centred dignity conserving measures. We believe an RToP-based tool could fulfil this role and further study into the design of this tool is planned.

Using Photographs to Bring Dignity to Patients and Help Clinicians Find Meaning and Joy in Work.

Background: The importance of dignity in health care is well described, yet limited interventions exist to improve dignity, particularly patient-driven interventions. Objectives: To test the hypothesis that patient-selected photographs at the bedside would impact patients' sense of dignity and clinicians' sense of meaningful work, stimulate conversation between patients and clinicians, and serve as a visual and patient-driven complement to the Patient Dignity Question (PDQ). Methods: Patients admitted to three units at an academic medical center displayed photographs above their head of bed and were interviewed for this study. We used thematic content analysis to compare themes extracted from patient interviews, the PDQ, and clinician surveys. Results: Eight themes emerged from patient interviews (n = 19): conveying goals, joy, capturing the patient's spirit, faith and spirituality, sense of belonging, physical appearance and health, stimulating conversation and meaningful connections, and humanizing the patient. The same themes emerged from the PDQ, with the exception of physical appearance and health. Notably, analysis of the clinician surveys (n = 40) yielded six similar themes: conveying goals, joy, stimulating conversation and meaningful connections, humanizing the patient, meaningful work, and compassion and empathy. Conclusions: Patient-selected photographs at the bedside impact both patients and clinicians by stimulating conversation and meaningful connections, humanizing patients, and fostering meaning and joy in work. Photographs and the PDQ provide a similar window into personhood, thereby supporting the use of a photograph as a visual and patient-driven complement to the PDQ.

Notas para decolonizar os estudos transpessoais no brasil: contribuições do pluriperspectivismo participativo / Notes for decolonizing transpersonal studies in brazil: contributions of participatory pluriperspectivism / Apuntes para la decolonización de los estudios transpersonales en brasil: aportes del pluriperspectivismo participativo

O campo dos estudos transpessoais tem avançado em diversas áreas no Brasil. Comemorou seus 40 anos com uma inserção ativa nas Instituições de Ensino Superior (IES) e uma ampliação de núcleos formativos e apoiadores de ensino, pesquisa e ações sociais, além de diálogos com o Sistema de Conselhos de Psicologia. Desafios são apresentados a partir do levantamento de uma série de questões importantes e ignoradas dentro da Psicologia Transpessoal no Brasil. Apresentamos o pluriperspectivismo participativo como possibilidade de decolonizar as matrizes eurocêntricas e estadunidenses, que dão suporte ao pensamento transpessoal brasileiro, buscando honrar nossas raízes históricas e incluir outras epistemologias e ontologias, que dão continuidade à crítica à lógica cartesiana moderna. Indicamos uma breve agenda de notas temáticas que carecem de um processo decolonizador no campo transpessoal: a) crítica às perspectivas de um pensamento hegemônico, em termos globais por meio da dominação Norte-Sul ou no campo das relações sociais; b) revisão das formas de "centrocentrismo"; c) questionamento da noção de universalismo das ciências e da ética; d) aprofundamento da análise crítica da supremacia restritiva da racionalidade formal técnico-científica em relação às formas de subjetividade, de vivências holísticas e integradoras e de valorização do corpo; e) revisão da noção de sujeito moderno desprovida da cocriação do humano com a comunidade, a história, a natureza e o cosmos.(AU)

The field of transpersonal studies has advanced in several areas in Brazil. It celebrated its 40th anniversary with an active insertion in Higher Education Institutions (HEI) and an expansion of training centers and supporters of teaching, research, and social actions, in addition to dialogues with the System of Councils of Psychology. Challenges are presented based on a survey of a series of important and ignored issues within Transpersonal Psychology in Brazil. We present participatory pluriperspectivism as a possibility to decolonize the Eurocentric and North American matrices that support Brazilian transpersonal thought, seeking to honor our historical roots and include other epistemologies and ontologies, which continue the critique of modern Cartesian logic. We indicate a brief agenda of thematic notes that lack a decolonizing process in the transpersonal field: a) criticism of the perspectives of a hegemonic thought, whether in global terms via North-South domination or in the field of social relations; b) review of the forms of "centrocentrism"; c) questioning of the notion of universalism of science and ethics; d) deepening of the critical analysis of the restrictive supremacy of the technical-scientific formal rationality in relation to the forms of subjectivity, of holistic and integrative experiences, and of valuing the body; e) review of the notion of the modern subject devoid of the co-creation of the human with the community, the history, the nature, and the cosmos.(AU)

El campo de los estudios transpersonales ha avanzado en varias áreas de Brasil. Se celebró su 40.º aniversario con una inserción activa en Instituciones de Educación Superior (IES) y una ampliación de los centros de formación y promotores de la docencia, la investigación y la acción social, además de diálogos con el Sistema de Consejos de Psicología. Los desafíos se presentan a partir de una encuesta de una serie de temas importantes e ignorados dentro de la Psicología Transpersonal en Brasil. Presentamos el pluriperspectivismo participativo como una posibilidad para decolonizar las matrices eurocéntrica y americana, que sustentan el pensamiento transpersonal brasileño, buscando honrar nuestras raíces históricas e incluir otras epistemologías y ontologías que continúan la crítica de la lógica cartesiana moderna. Indicamos una breve agenda de apuntes temáticos que carecen de un proceso decolonizador en el campo transpersonal: a) crítica de las perspectivas de un pensamiento hegemónico, ya sea en términos globales a través del dominio Norte-Sur o en el campo de las relaciones sociales; b) revisión de las formas de "centrocentrismo"; c) cuestionamiento de la noción de universalismo de la ciencia y la ética; d) profundización del análisis crítico de la supremacía restrictiva de la racionalidad formal técnico-científica en relación a las formas de subjetividad, de experiencias holísticas e integradoras y de valoración del cuerpo; e) revisión de la noción de sujeto moderno desprovisto de la cocreación de lo humano con la comunidad, la historia, la naturaleza y el cosmos.(AU)

The impact of death and dying on the personhood of senior nurses at the National Cancer Centre Singapore (NCCS): a qualitative study.

BACKGROUND: A nurse's role in caring for the dying is fraught with ethical, professional, and psychosocial challenges that impact how they perceive their roles as professionals. When unsupported, nurses caring for the dying experience burnout, career dissatisfaction and leave the profession. Better understanding of how caring for the dying affects the professional identity formation (PIF) of nurses will guide efforts to better support nurses. METHODS: Guided by new data on the subject, we adopt the theoretical lens of the Ring Theory of Personhood (RToP) to evaluate how caring for the dying impacts the values, beliefs, principles, professional identities and personhood of nurses. We employ Krishna's Systematic Evidence-Based Approach (SEBA) to guide the design and piloting of the semi-structured interview tool. RESULTS: Analysis of interviews with eight senior nurses in Supportive, Palliative and Oncology care revealed three domains: Identity 1) Formation; 2) Conflict and 3) Refinement. Identity Formation occurs early in a nurse's career, upon entering a new specialist field, and at the start of Supportive, Palliative and Oncology care. Identity Formation reveals significant changes to how self-concepts of professional identities are tied to individual concepts of personhood. Caring for the dying, however, resulted in Conflicts between values, beliefs, and principles within regnant concepts of personhood and their professional duties. These conflicts are captured as conflicts within ('disharmony') and/or between ('dyssynchrony') the rings of the RToP. These conflicts can result in changes to self-concepts of personhood and professional identities. Identity Refinement sees experience and timely support helping nurses attenuate the impact of difficult experiences. This reduces the risk of burnout and mitigates changes to their professional identities. Identity Refinement helps them develop a 'rooted identity' which remains relatively consistent in the face of adversity. CONCLUSIONS: Ongoing Identity Construction amongst nurses, particularly in caring for the dying, underscore the host organisation's role in ensuring structured, longitudinal, accessible, and personalised assessments and support of nurses, especially when they are prone to dyssynchrony and disharmony whilst caring for the terminally ill. Further study into assessment methods and the role of the environment is critical.

A Portuguese trial using dignity therapy for adults who have a life-threatening disease: Qualitative analysis of generativity documents.

OBJECTIVES: Dignity therapy (DT) is a brief, individualized intervention, which provides terminally ill patients with an opportunity to convey memories, essential disclosures, and prepare a final generativity document. DT addresses psychosocial and existential issues, enhancing a sense of meaning and purpose. Several studies have considered the legacy topics most frequently discussed by patients near the end of life. To date, no Portuguese study has done that analysis. METHOD: We conducted a qualitative analysis of 17 generativity documents derived from a randomized controlled trial (RCT). Inductive content analysis was used to identify emerging themes. RESULTS: From the 39 RCT participants receiving DT, 17 gave consent for their generativity document to undergo qualitative analysis. Nine patients were female; mean age of 65 years, with a range from 46 to 79 years. Seven themes emerged: "Significant people and things"; "Remarkable moments"; "Acknowledgments"; "Reflection on the course of life"; "Personal values"; "Messages left to others"; and "Requests and last wishes". SIGNIFICANCE OF RESULTS: Generativity document analysis provides useful information for patients nearing death, including their remarkable life moments and memories, core values, concerns, and wishes for their loved ones. Being conscious of these dominant themes may allow health providers to support humanized and personalized care to vulnerable patients and their families, enhancing how professionals perceive and respond to personhood within the clinical setting.

Normative force of appeals to personhood in dementia care: A critical examination of Kitwood's account of personhood.

In this paper, I critically examine Kitwood's account of personhood for people with dementia. His account has been influential in supporting appeals to personhood in both clinical and bioethical literature on dementia care. I demonstrate that Kitwood's account does not run into common objections against invoking personhood as a normative notion, namely, the objection of exclusionary implications and the objection of redundancy. I argue, however, that Kitwood's account suffers from two other major conceptual issues. These include (a) unreasonable social contingency, and thus, precariousness, of his notion of personhood for people with dementia; and (b) insufficient theoretical connection between his account of personhood and his proposed list of indicators of well-being for people with dementia. Despite these issues, I do not agree with the following view: that, in the context of dementia care, scholars should refrain from appealing to personhood considerations. Instead, I defend the view that while Kitwood fails to offer a compelling theoretical account of personhood of people with dementia, his empirically driven list of indicators of well-being and his notion of malignant social phycology seem to be sensitive to key ethical considerations relevant to dementia care. I propose that we pursue alternative ways of explaining what is morally (un) desirable about them without (explicit) appeal to personhood.

A comunicação na promoção da dignidade em cuidados paliativos: desafios para a enfermagem / Comunicación en la promoción de la dignidad en los cuidados paliativos: desafíos para la enfermería / Communication in promoting dignity in palliative care: challenges for nursing

Objetivo compreender a influência da comunicação enquanto instrumento básico de Enfermagem na promoção da dignidade em Cuidados Paliativos. Método reflexão teórica mediante revisão da literatura e com recurso ao Modelo da Dignidade de Chochinov. A pesquisa de artigos científicos foi realizada na biblioteca do conhecimento online, na base de dados das publicações Elsevier e na plataforma agregadora de bases de dados EBSCO Host Web, publicados durante o período 2010-2016. Resultados identificou-se intervenções associadas às competências comunicacionais dos enfermeiros que promovem a dignidade dos clientes em cuidados paliativos. As intervenções comunicacionais que mais promovem a dignidade são as que transmitem ao cliente paliativo o respeito pela sua individualidade e valorização da sua história pessoal. Conclusão o enfermeiro deve adotar uma postura de compreensão empática, escuta ativa, disponibilidade, atenção às necessidades emocionais, aos componentes não verbais (como a presença física e o contacto visual), à gestão de expectativas e o incentivo do autocuidado.

Objetivo entender la influencia de la comunicación como instrumento básico de enfermería en la promoción de la dignidad en los Cuidados Paliativos. Método reflexión teórica a través de la revisión de la literatura y el uso del Modelo de Dignidad de Chochinov. La investigación de artículos científicos se llevó a cabo en la biblioteca de conocimientos en línea, en la base de datos de publicaciones Elsevier y en la plataforma agregadora de bases de datos EBSCO Host Web, publicados durante el período 2010-2016. Resultados se identificaron intervenciones asociadas a las habilidades de comunicación de las enfermeras que promueven la dignidad de los clientes en los cuidados paliativos. Las intervenciones de comunicación que más promueven la dignidad son las que transmiten al cliente paliativo el respeto por su individualidad y apreciación de su historia personal. Conclusión las enfermeras deben adoptar una postura empática de comprensión, escucha activa, disponibilidad, atención a las necesidades emocionales, componentes no verbales (como la presencia física y el contacto visual), gestión de expectativas y fomento del autocuidado.

Objective to understand the influence of communication as a basic nursing instrument in the promotion of dignity in Palliative Care. Method theoretical reflection through literature review and using Chochinov's Dignity Model. The research of scientific articles was carried out on the online knowledge library, on the Elsevier publications database and on the database-aggregating platform EBSCO Host Web, published during the period 2010-2016. Results interventions associated with nurses' communication skills that promote the dignity of clients in palliative care were identified. The communication interventions that most promote dignity are those that transmit to the palliative client respect for their individuality and appreciation of their personal history. Conclusion nurses should adopt a posture of empathic understanding, active listening, availability, attention to emotional needs, nonverbal components (such as physical presence and visual contact), management of expectations and encouragement of self-care.

Aspectos bioéticos dos cuidados em saúde às pessoas idosas ao fim da vida / Bioethical aspects of health care provided to older adults at the end of their lives / Aspectos bioéticos de los cuidados de salud a adultos mayores en el final de la vida

Objetivo: analisar a produção científica nacional e internacional, buscando as interfaces existentes entre os princípios bioéticos e os cuidados em saúde prestados ao fim da vida às pessoas idosas. Método: revisão integrativa, cuja busca ocorreu entre outubro e novembro de 2019 nas bases de dados Medline via Pubmed, Lilacs e Scopus com os descritores: "Palliative Care", "Aged" e "Bioethics" de 2014-2019. Resultados: a partir dos artigos selecionados, emergiram as seguintes categorias: condutas terapêuticas frente aos cuidados ao fim da vida; tomada de decisão nos cuidados ao fim da vida; e desafios nos cuidados ao fim da vida. Conclusão: destaca-se a relevância dos profissionais manterem o compromisso com a pessoa idosa e sua família de forma a considerar suas subjetividades e preferências e os instrumentalizar para que os cuidados sejam pautados em princípios bioéticos, para assim proporcionar um processo de morte e de morrer com dignidade.

Objective: to examine the Brazilian and international scientific production for connections between bioethical principles and the health care provided to older adults at the end of their lives. Method: between October and November 2019 this integrative review searched the Medline (Pubmed), Lilacs, and Scopus databases using the descriptors: "Palliative Care", "Aged", and "Bioethics" for the period 2014-2019. Results: the following categories emerged from the selected articles: therapeutic conducted with regard to end-of-life care; decision making on end-of-life care; and challenges in end-of-life care. Conclusion: of particular importance is for health professionals to uphold their commitment to older adults and their families, consider their subjectivities and preferences, and empower and equip them so that care is guided by bioethical principles in order to assure a dignified process of dying and death.

Objetivo: examinar la producción científica brasileña e internacional en busca de conexiones entre los principios bioéticos y la atención médica brindada a los adultos mayores al final de sus vidas. Método: entre octubre y noviembre de 2019, esta revisión integradora buscó en las bases de datos Medline (Pubmed), Lilacs y Scopus utilizando los descriptores: "Cuidados paliativos", "Envejecido" y "Bioética" para el período 2014-2019. Resultados: las siguientes categorías surgieron de los artículos seleccionados: terapéutico realizado con respecto a la atención al final de la vida; toma de decisiones sobre la atención al final de la vida; y desafíos en la atención al final de la vida. Conclusión: es de particular importancia que los profesionales de la salud mantengan su compromiso con los adultos mayores y sus familias, consideren sus subjetividades y preferencias, y los empoderen y equipen para que la atención se guíe por principios bioéticos para asegurar un proceso digno de muerte y muerte.

Dignity and loss of dignity: Experiences of older women living with incurable cancer at home.

In this study, we explored and identified crucial experiences that constitute dignity and loss of dignity among older women living with incurable cancer at home. In-depth interviews with 13 women, and participant observations of five of these women, were performed. Hermeneutical interpretations of interview texts and field notes were conducted. Crucial experiences that preserved the women's dignity included having a sense of control, making one's own decisions, experiencing hope and meaningfulness, feeling valued as a human being and having the opportunity to be in a treasured and nurturing environment. Dignity loss was related to losing the opportunity for self-determination, sensing hopelessness and worthlessness in a shroud of illness, experiencing violation of their personal life and being situated in surroundings that enhanced their sense of disconnection and alienation. Quality of care was experienced as more important than the physical place in which to spend their final stage of life. The findings suggest that dignity preservation should be a core dimension in care for older women living with incurable cancer at home. Future research should investigate how dignity-preserving care can be organized and practiced within municipal palliative care services.

[Humanize Death in a Time of Sanitary Crisis: Accompanied Die, Farewell and Receive Spiritual Care]. / Humanizar la Muerte en Tiempos de Crisis Sanitaria: Morir Acompañado, Despedirse y Recibir Atención Espiritual.

The crisis in the health system caused by COVID-19 has left some important humanitarian deficits on how to care for the sick in their last days of life. The humanization of the dying process has been affected in three fundamental aspects, each of which constitutes a medical and ethical duty necessary. In this study, I analyze why dying accompanied, with the possibility of saying goodbye and receiving spiritual assistance, constitutes a specific triad of care and natural obligations that should not be overlooked - even in times of health crisis - if we do not want to see human dignity violated and violated some fundamental rights derived from it.

Perspectivas bioéticas sobre tomada de decisão em tempos de pandemia / Bioethical perspectives on decision-making in times of pandemic / Perspectivas bioéticas sobre la toma de decisiones en tiempos de pandemia

Resumo Este artigo busca identificar contribuições da bioética para enfrentar conflitos relacionados à tomada de decisão em tempos de pandemia. Trata-se de texto elaborado a partir de reflexões pessoais dos autores em diálogo com a literatura de diferentes perspectivas da bioética. Com fundamento em relatos históricos, argumenta-se que, durante epidemias, a sociedade passa a atuar em modo de excepcionalidade, o que exige argumentação mais apurada para se posicionar ante os conflitos que surgem. Analisam-se então diferentes vertentes teóricas - principialismo, personalismo, utilitarismo e bioética social -, recolhendo de cada uma elementos que podem nortear a tomada de decisão. Com base nessas contribuições, propõem-se parâmetros para a atuação dos profissionais da saúde, reconhecendo igual valor em cada vida humana, com o propósito de salvar o maior número de pessoas possível. Por fim, aponta-se para a responsabilidade de agentes políticos.

Abstract This article aims to identify the contribution of bioethics to resolve decision-making conflicts in healthcare in times of pandemic. The research was based on the authors' personal reflections in a dialogue with the literature and different bioethical perspectives. Historical accounts show that when a society is experiencing an epidemic it starts to function in a mode of social exceptionality, reinforcing the need for a more appropriate form of reasoning before the ethical conflicts that may arise from this situation. Some approaches to bioethics - principlism, personalism, utilitarianism and social bioethics - are briefly examined in order to obtain the elements for guiding the decision-making process. Finally, we suggest some parameters for health professionals, recognizing the value of all human lives, to save as many lives as possible.

Resumen Este artículo tiene como objetivo identificar la contribución de la bioética para hacer frente a los conflictos relacionados con la toma de decisiones en tiempos de pandemia. Se trata de un texto elaborado con base en las reflexiones personales de los autores en diálogo con la literatura de diferentes perspectivas de la bioética. Con base en los relatos históricos, se argumenta que, durante epidemias, la sociedad pasa a actuar en modo de excepcionalidad, lo que requiere una argumentación más precisa para posicionarse ante los conflictos que surgen. Se analizan entonces diferentes vertientes teóricas -el principialismo, el personalismo, el utilitarismo y la bioética social-, recogiendo de cada una los elementos que pueden orientar la toma de decisiones. Con base en dichas contribuciones, se proponen parámetros para la actuación de los profesionales de la salud, reconociendo el mismo valor en cada vida humana, con el propósito de salvar al mayor número posible de personas. Por fin, se apunta hacia la responsabilidad de los agentes políticos.

GnRHa ('Puberty Blockers') and Cross Sex Hormones for Children and Adolescents: Informed Consent, Personhood and Freedom of Expression.

Ethical concerns have been raised about routine practice in paediatric gender clinics. We discuss informed consent and the risk of iatrogenesis in the prescribing of gonadotropin-releasing hormone analogues (GnRHas) and cross sex hormones to children and adolescents respectively. We place those clinical concerns in a wider societal context and invite consideration of two further relevant ethical domains: competing rights-based claims about male and female personhood; and freedom of expression about those claims. When reflecting on the assessment and medicalization of children and adolescents presenting at gender clinics, the matters of informed consent and iatrogenic risk should be the most pressing for clinicians. However, this is not just a matter of medical ethics, it also implies the need for a full ethical debate on competing notions of personhood and the defence of freedom of expression about transgender and its implications within contemporary democracies.

Cancer: a perspective of human dignity and informed consent from ethics and justice / Cáncer: Una perspectiva de la dignidad humana y el consentimiento informado desde la ética y la justicia

ABSTRACT This article attempts to reflect on the importance of thinking in general about illness and about cancer, from an ethical perspective. This approach reveals the central role of personal dignity and the moral relevance that supports the reasons for respecting people. The ethical values that sustain the practice of medicine must aim at uplifting this dignity and seeking situations of justice, since living in a community expresses intersubjectivity that cannot be truncated by illnesses like cancer. Therefore, situations involving poverty cannot justify the lack of health care, and if such lacks occur, they run counter to ethical awareness in the deepest sense and destroy intersubjectivity. As a result, cancer is suffered as a vital experience, in a framework of lives that are lived and are not simply objects of study; those stricken with cancer are individuals who are denied the human right to health, and undergo the elimination of their dignity, the cancelation of justice, and a death sentence. Society is part of these actions and at the same time, suffers from the disappearance of hope. In this sense, the process of informed consent is used as a tool that encourages dialog and understanding between doctors and patients during proper treatment, on a shared path.(AU)

RESUMEN El artículo pretende hacer una reflexión sobre la importancia de pensar, en general, la enfermedad y, en particular, el cáncer, desde una perspectiva ética. Este acercamiento permite vislumbrar el papel central que tiene la dignidad de las personas y la relevancia moral que apuntalan las razones por las cuales ellas han de ser respetadas. Los valores éticos que sustentan la práctica médica han de apelar a enaltecer dicha dignidad y buscar situaciones de justicia, dado que vivir en comunidad da cuenta de una intersubjetividad que no puede ser truncada por enfermedades como el cáncer. Esto evidencia que las situaciones de pobreza no pueden justificar la carencia de cuidados de salud y que, cuando esto sucede, se contraviene, desde lo más hondo, una conciencia de carácter ético y se rompe la intersubjetividad. El cáncer se sufre en tanto experiencia vital, en un marco de vidas vividas y no simplemente de objetos de estudio; los enfermos son personas a quienes se les niega el derecho humano de la salud, se les borra su dignidad, se cancela la justicia y se les condena a la muerte. La sociedad es parte de estas acciones y a la vez sufre la cancelación de esperanzas. En este sentido, se retoma el proceso del consentimiento informado (CI) como una herramienta que permite el diálogo y la comprensión entre médicos y pacientes en la atención digna, en un camino compartido.(AU)