Validación de un instrumento para medir el respeto de la autonomía del paciente en situación terminal durante la toma de decisiones médicas sobre el final de la vida / Validació d'un instrument per mesurar el respecte de l'autonomia del pacient en situació terminal durant la presa de decisions mèdiques sobre el final de la vida / Validation of an instrument to measure respect for the autonomy of terminally ill patients during end-of-life medical decision-making

Antecedentes: El respeto por la autonomía de la persona consiste en considerarlas preferencias y valores de la persona enferma durante la toma de decisions sobre el tipo de atención que recibe y es un elemento bioético-jurídico. Sin embargo, no existen instrumentos validados sobre este fenómeno que ayuden aclarificar la percepción del médico sobre este principio.Objetivo: Elaborar, validar mediante juicio de expertos y pilotear para obtener la consistencia interna de un instrumento que evalúa el nivel de acuerdo de los médicos sobre los diferentes elementos que constituyen el respeto por la autonomía de la persona enferma en etapa terminal.Métodos: Estudio transversal. Método de validación por juicio de diez expertos de México. El instrumento se piloteó en médicos de un hospital público de alta especialidad para determinar la consistencia interna del mismo.Resultados: Se generó un instrumento de 15 ítems con un índice de validez de contenido de 0.82 para 10 expertos. Fue piloteado en una muestra de 96 médicos. Se obtuvo un alfa de Cronbach de 0.694.Conclusiones: Se desarrolló, validó y evaluó la consistencia interna de un cuestionario para medir el nivel de acuerdo de médicos que atienden a persones enfermas en etapa terminal con relación a los aspectos constitutivos sobre el respeto de su autonomía. Se recomienda su aplicación en médicos para corroborar su utilidad y favorecerun diagnóstico situacional sobre la situación estudiada.(AU)

Antecedents: El respecte per l'autonomia de la persona consisteix a considerar-les preferències i valors de la persona malalta durant la presa de decisions sobre el tipus d'atenció que rep i és un element bioeticojurídic. No obstant això, no hi ha instruments validats sobre aquest fenomen que ajudin a aclarir la percepció del metge sobreaquest principi.Objectiu: Elaborar, validar mitjançant un judici d'experts i pilotejar per obtenir la consistència interna d'un instrument que avalua el nivell d'acord dels metges sobre els diferents elements que constitueixen el respecte per l'autonomiade la persona malalta en l'etapa terminal.Mètodes: Estudi transversal. Mètode de validació per judici de deu experts de Mèxic. L'instrument es va pilotejar en metges d'un hospital públic d'alta especialitat per determinar-ne la consistència interna.Resultats: Es va generar un instrument de 15 ítems amb un índex de validesa de contingut de 0.82 per a 10 experts. Va ser pilotejat en una mostra de 96 metges. S'obtingué un alfa de Cronbach de 0.694.Conclusions: Es va desenvolupar, validar i avaluar la consistència interna d'un qüestionari per mesurar el nivell d'acord de metges que atenen persones malaltes en etapa terminal amb relació als aspectes constitutius sobre el respecte de la seva autonomia. Se'n recomana l'aplicació en metges per corroborar-ne la utilitat i afavorir un diagnòstic situacional sobre la situació estudiada.(AU)

Background: Respect for the autonomy of the person consists in considering the preferences and values of the sick person when making decisions about the type of care they receive and is a bioethical-legal element. However, there are no validated instruments on this phenomenon that help to clarify the physician's perception of this principle.Objective: To elaborate, validate through expert judgment and determine the internal consistency of an instrument that evaluates the level of agreement that the doctors have on the different elements that constitute respect for theautonomy of the terminally ill person.Methods: Cross-sectional study. The expert judgment validation method was used with a panel of ten experts from Mexico. The instrument was piloted in doctors of a highly specialized public hospital to determinate itsinternal consistency.Results: An instrument of 15 items was generated with a content validity index of 0.82 for 10 experts. It was piloted in a sample of 96 doctors (31.3% female and 68.7% male) and with an average age of 30 years. The Cronbach's alpha was 0.694.Conclusions: A questionnaire was developed to measure the level of agreement that the doctor who cares for terminally ill people has in relation to the constitutive aspects of respect for their autonomy. Based on the results of the validation andinternal consistency, its application in medical populations is recommended to corroborate its usefulness and favoura simple situational diagnosis of the situation studied.(AU)

La dignidad de la mujer como argumento jurídico relevante en la Sentencia del Tribunal Supremo español 277 /2022, de 31 de marzo de 2022, sobre filiación en la gestación subrogada / La dignitat de la dona com a argument jurídic rellevant en la Sentència del Tribunal Suprem espanyol 277 /2022, de 31 de març de 2022, sobre filiació en la gestació subrogada / The dignity of women as a relevant legal argument in Spanish Supreme Court Ruling 277/2022, 31 March 2022, on filiation in surrogacy

Este comentario se centra en analizar uno de los aspectos relevantes de la reciente sentencia dictada por el Pleno de la Sala de lo Civil del Tribunal Supremo español, el 31 de marzo de 2022. La decisión jurisdiccional, aunque tiene por objeto la determinación de la filiación, se pronuncia sobre la polémica cuestión que se sitúa claramente en el ámbito de la Bioética y que está siendo, ya desde hace algún tiempo, objeto de un intenso debate social, político y jurídico, cual es la maternidad subrogada y su incidencia en la dignidad de la mujer, como cualidad intrínseca inherente a sus derechos más básicos y fundamentales. En este supuesto, el Tribunal Supremo, de manera rotunda, considera que se produce una vulneración flagrante de la dignidad de la mujer gestante y de sus derechos inviolables. Tras examinar el significado del principio esencial de la dignidad humana, se concluye que dicha cualidad es innegociable e inalienable y, por tanto, no es susceptible de resignificación que la menoscabe o menosprecie en ningún caso, en ninguna otra cultura ni en ningún otro contexto.(AU)

Aquest comentari se centra aanalitzar un dels aspectes rellevants de la recent sentència dictada pel Ple de la Sala Civil del Tribunal Suprem espanyol, el 31 de març de 2022. La decisió jurisdiccional, encara que té per objecte la determinació de la filiació, es pronuncia sobre la polèmica qüestió que se situa clarament a l'àmbit de la Bioètica i que està sent, ja des de fa algun temps, objecte d'un intens debat social, polític i jurídic, quina és la maternitat subrogada i la seva incidència en la dignitat de la dona, com a qualitat intrínseca inherent als seus drets més bàsics i fonamentals. En aquest cas, el Tribunal Suprem, de manera rotunda, considera que es produeix una vulneració flagrant de la dignitat de la dona gestant i dels seus drets inviolables. Després d'examinar el significat del principi essencial de la dignitat humana, es conclou que aquesta qualitat és innegociable i inalienable i, per tant, no és susceptible de resignificació que la menyscabi o menyspreï en cap cas, en cap altra cultura ni en cap altre context.(AU)

This commentary focuses on analyzing one of the relevant aspects of the recent decision handed down by the Plenary of the Civil Chamber of the Spanish Supreme Court on March 31, 2022. The jurisdictional decision, although its purpose is to determine parentage, pronounces on the controversial issue that is clearly located in the field of Bioethics and which has been, for some time now, the subject of an intense social, political and legal debate, which is surrogate motherhood and its impact on the dignity ofwomen, as an intrinsic quality inherent to their most basic and fundamental rights. In this case, the Spanish Supreme Court categorically considers that there is a flagrant violation of the dignity of pregnant women and their inviolable rights. After examining the meaning of the essential principle of human dignity, it is concluded that said quality is non-negotiable and inalienable and, therefore, it is not susceptible to resignification that undermines or belittles it in any case, in any other culture, or in any other context.(AU)

Regulating genetic engineering guided by human dignity, not genetic essentialism.

How might a liberal democratic community best regulate human genetic engineering? Relevant debates widely deploy the usually undefined term "human dignity." Its indeterminacy in meaning and use renders it useless as a guiding principle. In this article, I reject the human genome as somehow invested with a moral status, a position I call "genetic essentialism." I explain why a critique of genetic essentialism is not a strawman and argue against defining human rights in terms of genetic essentialism. As an alternative, I propose dignity as the decisional autonomy of future persons, held in trust by the current generation. I show why a future person could be expected to have an interest in decisional autonomy and how popular deliberation, combined with expert medical and bioethical opinion, could generate principled agreement on how the decisional autonomy of future persons might be configured at the point of genetic engineering.

Hospital Experiences of Dignity in People Who Inject Drugs.

BACKGROUND: Dignity is a complex concept necessary for the adequate treatment of patients in the healthcare setting. Autonomy, self-sufficiency, respect, and equality are concepts used to define dignity. Dignity has not been studied in people who inject drugs (PWID). OBJECTIVE: This study aimed to determine how PWID maintain or have their dignity threatened during hospitalization in an acute care unit. DESIGN: The qualitative descriptive study was a deductive thematic analysis of secondary data on PWID experiences with received nursing care. In-depth, semistructured interviews were conducted and transcribed verbatim with a constant comparison method for thematic analysis using NVivo. A priori codes of dignity concepts from the literature and dignity scales were used as a guide to examine the nine qualitative transcripts. FINDINGS: The three most common threats to dignity during hospitalization were lack of equality compared with other patients, not feeling valued as an individual, and not feeling respected by the healthcare workers providing care. The three most common protectors of dignity were feeling respected by healthcare workers, having autonomy in treatment choices, and feeling valued as an individual. CONCLUSIONS: Protecting dignity significantly affects whether PWID are willing to seek healthcare in the hospital setting. Preserving dignity in PWID during their hospitalizations can encourage this population to seek care earlier. Nurses must be experienced in caring for PWID and provide nonjudgmental care for this population.

Exploring COVID-19 Vaccine Attitudes among Racially and Ethnically Minoritized Communities: Community Partners' and Residents' Perspectives.

COVID-19 has disproportionately affected Black, Indigenous, and People of Color (BIPOC) communities, yet rates of COVID-19 vaccination remain low among these groups. A qualitative study was undertaken to better understand the factors contributing to low vaccine acceptance among these communities. Seventeen focus groups were conducted in English and Spanish from 8/21 to 9/22, with representatives from five critical community sectors: (1) public health departments (n = 1); (2) Federally Qualified Health Centers (n = 2); (3) community-based organizations (n = 1); (4) faith-based organizations (n = 2); and (5) BIPOC residents in six high-risk, underserved communities in metropolitan Houston (n = 11), for a total of 79 participants, comprising 22 community partners and 57 community residents. A social-ecological model and anti-racism framework were adopted to guide data analysis using thematic analysis and constant comparison, which yielded five key themes: (1) legacy of structural racism: distrust and threat; (2) media misinformation: mass and social; (3) listening and adapting to community needs; (4) evolving attitudes towards vaccination; and (5) understanding alternative health belief systems. Although structural racism was a key driver of vaccine uptake, a notable finding indicated community residents' vaccine attitudes can be changed once they are confident of the protective benefits of vaccination. Study recommendations include adopting an explicitly anti-racist lens to: (1) listen to community members' needs and concerns, acknowledge their justified institutional distrust concerning vaccines, and learn community members' healthcare priorities to inform initiatives built on local data; (2) address misinformation via culturally informed, consistent messaging tailored to communal concerns and delivered by trusted local leaders through multimodal community forums; (3) take vaccines to where people live through pop-up clinics, churches, and community centers for distribution via trusted community members, with educational campaigns tailored to the needs of distinct communities; (4) establish vaccine equity task forces to continue developing sustainable policies, structures, programs and practices to address the structural issues driving vaccine and health inequities within BIPOC communities; and (5) continue investing in an effective infrastructure for healthcare education and delivery, essential for competently responding to the ongoing healthcare and other emergency crises that impact BIPOC communities to achieve racial justice and health equity in the US. Findings underscore the crucial need to provide culturally tailored health education and vaccination initiatives, focused on cultural humility, bidirectionality, and mutual respect to support vaccine re-evaluation.

Applying the COM-B Model to Understand the Drivers of Mistreatment During Childbirth: A Qualitative Enquiry Among Maternity Care Staff.

INTRODUCTION: Respectful maternity care (RMC) during childbirth is an integral component of quality of care. However, women's experiences of mistreatment are prevalent in many low- and middle-income countries. This is a complex phenomenon that has not been well explored from a behavioral science perspective. We aimed to understand the behavioral drivers of mistreatment during childbirth among maternity care staff at public health facilities in the Sindh province of Pakistan. METHODS: Applying the COM-B (capability-opportunity-motivation that leads to behavior change) model, we conducted semistructured in-depth interviews among clinical and nonclinical staff in public health facilities in Thatta and Sujawal, Sindh, Pakistan. Data were analyzed using thematic deductive analysis, and findings were synthesized using the COM-B model. RESULTS: We identified several behavioral drivers of mistreatment during childbirth: (1) institutional guidelines on RMC and training opportunities were absent, resulting in a lack of providers' knowledge and skills; (2) facilities lacked the infrastructure to maintain patient privacy and confidentiality and did not permit males as birth companions; (3) lack of provider performance monitoring system and patient feedback mechanism contributed to providers not feeling appreciated or recognized. Staff bias against patients from lower castes contributed to patient abuse and mistreatment. The perspectives of clinical and nonclinical staff overlapped regarding potential drivers of mistreatment during childbirth. CONCLUSIONS: Addressing mistreatment during childbirth requires improving the knowledge and capacity of maternity staff on RMC and psychosocial support to enhance their understanding of RMC. At the health facility level, governance and accountability mechanisms in routine supervision and monitoring of staff need to be improved. Patients' feedback should be incorporated for continuous improvement in providing maternity care services that meet patients' preferences and needs.

Cancer: a perspective of human dignity and informed consent from ethics and justice.

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.

Dignity at stake - relatives' experiences of influencing dignified care in nursing homes.

BACKGROUND: Dignity, in the care of older nursing home residents, has been an increasingly part of the public discourse the recent years. Despite a growing body of knowledge about dignity and indignity in nursing homes, we have less knowledge of how relatives experience their role in this context. This study is a follow-up to a previous study in nursing homes, which gave rise to concern about the relatives' descriptions of residents' dignity. The aim of this current study is to critically discuss relatives' experiences of influencing the dignified care of residents of nursing homes. METHODS: Methodologically, the study is informed by a critical hermeneutic stance, where the analysis is guided by a qualitative interpretive approach and a humanizing framework. This is a secondary analysis that includes data from five semi-structured focus groups from a previous study. The participants were 18 relatives of 16 residents living in two nursing homes in rural northern Norway. RESULTS: The main theme in this study, preventing missed care when dignity is at stake, is identified when relatives of nursing homes experience that they are able to influence dignified care by (a) pinpointing to prevent missed care and (b) compensating when dignity is threatened. CONCLUSIONS: Despite their stated good intentions to safeguard dignity, relatives of nursing homes experience being alienated in their attempts to change what they describe as undignified and unacceptable practice into dignified care. The relatives' observations of dignity and indignity are, contrary to what national and international regulations require, not mapped and/or used in any form of systematic quality improvement work. This indicates that knowledge-based practice in nursing homes, including the active application of user and relative knowledge, has untapped potential to contribute to quality improvement towards dignified care.

Autonomia em demência avançada e estados vegetativos permanentes na iminência de morte / Autonomía en demencia avanzada y estados vegetativos permanentes al borde de la muerte / Autonomy in advanced dementia and permanent vegetative states in imminent death

RESUMO. A autonomia privada existencial, como expressão da dignidade da pessoa humana, representa para o indivíduo a possibilidade de agir em conformidade com valores e significados eleitos essenciais na elaboração do seu projeto de vida. Neste estudo, seus autores, dois terapeutas ocupacionais, dois advogados e uma psicóloga, somam saberes e dialogam com intuito de demarcar a relevância da autonomia privada existencial nas condições de demência avançada, nos estados vegetativos permanentes e na iminência de morte. Na tarefa a que se propõem, os autores ponderam sobre suas experimentações e interlocuções enquanto profissionais de formação acadêmica diversificada, inclinados a ofertar espaços para comunicar vida e acolher dores. São apresentadas e discutidas as bases jurídicas da autonomia privada, assim como os pressupostos da Logoterapia de Viktor Frankl em defesa da liberdade de vontade e da dignidade no final da vida.

RESUMEN La autonomía existencial privada, como expresión de la dignidad de la persona humana, representa para el individuo la posibilidad de actuar de acuerdo con valores y significados elegidos esenciales en la elaboración de su proyecto de vida. En este estudio, sus autores, dos terapeutas ocupacionales, dos abogados y un psicólogo suman conocimiento y diálogo con el fin de demarcar la relevancia de la autonomía privada existencial en condiciones de demencia avanzada, en estados vegetativos permanentes y muerte inminente. En la tarea que proponen, los autores reflexionan sobre sus vivencias e interlocuciones como profesionales con una formación académica diversificada, inclinados a ofrecer espacios para comunicar la vida y acoger el dolor. Se presentan y discuten las bases legales de la autonomía privada, así como los supuestos de la Logoterapia de Viktor Frankl en defensa de la libertad de voluntad y dignidad al final de la vida.

ABSTRACT. Existential private autonomy, as an expression of the dignity of the human person, represents for the individual the possibility of acting in accordance with essential values and meanings for elaboration of their life project. The authors of this study, two occupational therapists, two lawyers and a psychologist gather their knowledge and dialogue to demarcate the relevance of existential private autonomy in conditions of advanced dementia, in permanent vegetative states and imminent death. In the task proposed, the authors pondered over their experiences and dialogues as professionals with a diversified academic background, inclined to provide spaces to communicate life and welcome pain. The legal bases of private autonomy are presented and discussed, as well as the assumptions of Viktor Frankl's Logotherapy in defense of freedom of will and dignity at the end of life.

Language That Respects Dignity in Nursing Practice.

Language provides an opportunity to understand, to bring meaning, and to disregard. Increased reports of incivility disrespect the basic dignity of persons whether these actions and language occur in or outside the workplace. The author of this article reviews the defining elements of civility and incivility and proposes a theoretically based humanbecoming approach.

Upskilling nursing students in Nepal: Evaluation of an online education module for promoting respectful maternity care.

OBJECTIVE: To explore Nepalese nursing student...s evaluation of an online education module on respectful maternity care. DESIGN: Cross-sectional study. SETTING: A medical college in Chitwan, Nepal. PARTICIPANTS: Forty third-year undergraduate nursing students. METHODS: Over a three-week time frame, students undertook three, two-hour online education sessions about respectful maternity care. Students were then invited to complete a purposely designed evaluation survey with 13 Likert-scale and yes/no items, and eight open-ended questions about the quality, relevance, impact, and areas for improvement of the education module. Responses were analysed using descriptive statistics and qualitative thematic analysis. FINDINGS: Students considered the education module to be useful and informative about respectful maternity care. More than half (60%) of the students agreed that the online delivery was more convenient than face-to-face, and learning was equivalent to a traditional class (87.5%). Most students (92.5%) reported that respectful maternity care is not explicitly covered in their degree. Students recommended that respectful maternity care be included in the curriculum and similar education offered to staff and women. Three themes from open-ended questions revealed: 1) empowerment through respectful maternity care; 2) motivation to initiate change; and 3) becoming a respectful clinician. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: Respect is essential in all areas of maternity care for improved experiences and outcomes for women and babies. Participants considered that the brief intervention improved their understanding of respectful maternity care and were inspired to implement change in their own practice to be more respectful to women. Curricula in all Nepalese institutions that offer preregistration education should customarily include respectful maternity care. Further research about respectful maternity care from the standpoint of women, educators, students, and maternity care providers in Nepal is required.

Dignity and Related Factors in Patients with Cancer: A Cross-Sectional Study.

PURPOSE: Dignity is a basic human right that is related to psychological distress factors in patients with cancer such as depression and demoralization. Hence, the dignity issue is of great importance to healthcare professionals. The present study aimed to advise healthcare professionals regarding the related distress factors of dignity in patients with cancer by investigating its relationship with patients' demographics, disease characteristics, and psychological distress. METHODS: This was a cross-sectional study design. A convenience sample of 267 patients with cancer from a medical center was recruited into this study. Each patient completed demographics and disease characteristics questionnaires, the Patient Dignity Inventory Mandarin Version, the Demoralization Scale Mandarin Version (DS-MV), and the Patient Health Questionnaire-9 (PHQ-9). Data were analyzed with SPSS 22.0 software. RESULTS: Dignity was significantly correlated with age, demoralization, and depression. Cancer patients aged 65 or above were more likely to have a lower sense of dignity. In the present study, the sensitivity and specificity of the Patient Dignity Inventory Mandarin Version for demoralization (DS-MV≥30) were 84.8% and 79.1% and for depression (PHQ-9≥10) were 73.8% and 70.9% in patients with cancer with an aggregate score of 35 or above. CONCLUSIONS: Dignity is significantly correlated with personal demographic characteristics and psychological distress in patients with cancer. The results provide reference data for healthcare professionals to understand and enable dignity in patients with cancer and aid in the development of methods that promote their dignity.

Project DECIDE, part 1: increasing the amount of valid advance directives in people with Alzheimer's disease by offering advance care planning-a prospective double-arm intervention study.

BACKGROUND: Everybody has the right to decide whether to receive specific medical treatment or not and to provide their free, prior and informed consent to do so. As dementia progresses, people with Alzheimer's dementia (PwAD) can lose their capacity to provide informed consent to complex medical treatment. When the capacity to consent is lost, the autonomy of the affected person can only be guaranteed when an interpretable and valid advance directive exists. Advance directives are not yet common in Germany, and their validity is often questionable. Once the dementia diagnosis has been made, it is assumed to be too late to write an advance directive. One approach used to support the completion of advance directives is 'Respecting Choices'®-an internationally recognised, evidence-based model of Advance Care Planning (ACP), which, until now, has not been evaluated for the target group of PwAD. This study's aims include (a) to investigate the proportion of valid advance directives in a memory clinic population of persons with suspected AD, (b) to determine the predictors of valid advance directives, and (c) to examine whether the offer of ACP can increase the proportion of valid advance directives in PwAD. METHOD: We intend to recruit at least N = 250 participants from two memory clinics in 50 consecutive weeks. Of these, the first 25 weeks constitute the baseline phase (no offer of ACP), the following 25 weeks constitute the intervention phase (offer of ACP). The existence and validity of an advance directive will be assessed twice (before and after the memory clinic appointment). Moreover, potential predictors of valid advance directives are assessed. DISCUSSION: The results of this study will enhance the development of consent procedures for advance directives of PwAD based on the ACP/Respecting Choices (R) approach. Therefore, this project contributes towards increasing the autonomy and inclusion of PwAD and the widespread acceptance of valid advance directives in PwAD. Trial Registration DRKS, DRKS00026691, registered 15th of October 2021, https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00026691.