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1.
J Perinat Med ; 2024 Aug 29.
Artículo en Inglés | MEDLINE | ID: mdl-39217452

RESUMEN

Vasa previa is a condition where unprotected fetal vessels cross the cervix within the membranes, posing a considerable risk of fetal death or severe morbidity if the membranes rupture before or during delivery. There has not been a definitive in utero treatment for this condition. Patients are typically closely monitored and hospitalized in the early third trimester and scheduled for cesarean delivery before term. This approach poses considerable physical, social, psychological, and financial challenges for pregnant patients and their families. Furthermore, fetal vessel rupture may lead to severe hypoxic-ischemic injury and consequent neurodevelopmental impairment. Finally, babies delivered early due to vasa previa may face both the short- and long-term consequences of prematurity. Recently, fetoscopic laser photocoagulation using a single-port fetoscope has emerged as a potential therapeutic option for patients with types II and III vasa previa. This innovative approach aims to reduce hospital stays, increases the chance of successful vaginal delivery, and potentially allows pregnancies to reach full term, providing lifelong benefits for the infant. Preliminary clinical studies on human subjects have demonstrated promising results concerning the feasibility, safety, and efficacy of this intervention for a subset of patients with types II and III vasa previa. After reviewing the current state of the art, we argued that offering fetoscopic laser photocoagulation in specialized centers under IRB supervision meets the ethical obligations of beneficence and non-maleficence for both pregnant and fetal patients, as well as the autonomy-based obligations for pregnant patients.

2.
J Med Ethics ; 2024 Aug 13.
Artículo en Inglés | MEDLINE | ID: mdl-39137962

RESUMEN

Many technology ethicists hold that the time has come to articulate neurorights: our normative claims vis-à-vis our brains and minds. One such claim is the right to mental integrity ('MI'). I begin by considering some paradigmatic threats to MI (§1) and how the dominant autonomy-based conception ('ABC') of MI attempts to make sense of them (§2). I next consider the objection that the ABC is overbroad in its understanding of what threatens MI and suggest a friendly revision to the ABC that addresses the objection (§3). I then consider a second objection: that the ABC cannot make sense of the MI of the non-autonomous This objection appears fatal even to the revised ABC (§4). On that basis, I develop an alternative conception on which MI is grounded in a plurality of simpler capacities, namely, those for affect, cognition, and volition Each of these more basic capacities grounds a set of fundamental interests, and they are for that reason worthy of protection even when they do not rise to the level of complexity necessary for autonomy (§5). This yields a fully general theory of MI that accounts for its manifestations in both the autonomous and the non-autonomous.

3.
J Med Ethics ; 2024 Aug 28.
Artículo en Inglés | MEDLINE | ID: mdl-39209379

RESUMEN

PURPOSE: Medical assistance in dying (MAiD) in Canada places the medical provider at the centre of the process. The MAiD provider holds primary responsibility for determining eligibility and becomes acquainted with patients' inner desires and expressions of suffering. This is followed by the MAiD procedure of administering the lethal agent and being present at the death of eligible patients. We report participants' perceptions of the emotional and moral impacts of this role. METHODOLOGY: Two years after MAiD was legalised in Canada, 22 early-adopting physician providers were interviewed. Data were examined using both phenomenological analysis and a novel ChatGPT-enhanced analysis of an anonymised subset of interview excerpts. FINDINGS: Participants described MAiD as emotionally provocative with both challenges and rewards. Providers expressed a positive moral impact when helping to optimise a patient's autonomy and moral comfort with their role in relieving suffering. Providers experienced tensions around professional duty and balancing self with service to others. Personal choice and patient gratitude enhanced the provider experience, while uncertainty and conflict added difficulty. CONCLUSIONS: Participants described MAiD provision as strongly aligned with a patient-centred ethos of practice. This study suggests that, despite challenges, providing MAiD can be a meaningful and satisfying practice for physicians. Understanding the emotional and moral impact and factors that enhance or detract from the providers' experience allows future stakeholders to design and regulate assisted dying in ways congruent with the interests of patients, providers, families and society.

4.
Invest Educ Enferm ; 42(1)2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-39083822

RESUMEN

Objective: To verify the association between reproductive autonomy and sociodemographic, sexual, and reproductive characteristics in Quilombola women (a term indicating the origin of politically organized concentrations of Afro-descendants who emancipated themselves from slavery). Methods: Cross-sectional and analytical study with 160 women from Quilombola communities in the southwest of Bahia, Brazil. Data were collected using the Reproductive Autonomy Scale and the questionnaire from the National Health Survey (adapted). Results: Out of the 160 participating women, 91.9% declared themselves as black, one out of every three were aged ≤ 23 years, 53.8% were married or had a partner, 38.8% had studied for ≤ 4 years, over half (58.1%) were unemployed, only 32.4% had a monthly income > R$ 430 (80 US dollars), 52.5% had their first menstruation at the age of 12, 70.7% had not accessed family planning services in the last 12 months, and over half used some method to avoid pregnancy (59.0%). The women had a high level of reproductive autonomy, especially in the "Decision-making" and "Freedom from coercion" subscales with a score of 2.53 and 3.40, respectively. A significant association (p<0.05) was found between the "Total reproductive autonomy" score and marital status, indicating that single or unpartnered women had higher autonomy compared to married or partnered women. Conclusion: The association of social determinants of health such as marital status, education, and age impacts women's reproductive choices, implying risks for sexual and reproductive health. The intergenerational reproductive autonomy of Quilombola women is associated with sociodemographic and reproductive factors.


Asunto(s)
Autonomía Personal , Humanos , Femenino , Brasil , Estudios Transversales , Adulto , Adulto Joven , Población Negra , Encuestas y Cuestionarios , Adolescente , Factores Socioeconómicos , Persona de Mediana Edad , Esclavización , Encuestas Epidemiológicas , Conducta Sexual/estadística & datos numéricos , Servicios de Planificación Familiar , Factores Sociodemográficos , Conducta Reproductiva/estadística & datos numéricos , Conducta Reproductiva/psicología
5.
SciELO Preprints; jul. 2024.
Preprint en Portugués | SciELO Preprints | ID: pps-8455

RESUMEN

Psychiatric disorders affect millions of people globally, representing a major public health challenge. Adherence to medication treatment is essential for the effective management of these disorders, but non-adherence rates are variable and worrying. Several factors, such as concerns about side effects, lack of knowledge about the disease, treatment costs and fear of dependence, are associated with non-adherence. This study explores the importance of patient autonomy in mental health, highlighting patient-centered strategies to improve treatment adherence. The need for innovative practices that empower patients is emphasized, promoting active and informed participation in treatment decisions, aiming to improve quality of life and therapeutic results.


Os transtornos psiquiátricos afetam milhões de pessoas globalmente, representando um grande desafio para a saúde pública. A adesão ao tratamento medicamentoso é fundamental para o manejo eficaz desses transtornos, mas as taxas de não adesão são variáveis e preocupantes. Diversos fatores, como preocupações com efeitos colaterais, desconhecimento sobre a doença, custos do tratamento e medo de dependência, estão associados à não adesão. Este estudo explora a importância da autonomia do paciente na saúde mental, destacando estratégias centradas no paciente para melhorar a adesão ao tratamento. Enfatiza-se a necessidade de práticas inovadoras que empoderem os pacientes, promovendo uma participação ativa e informada nas decisões de tratamento, visando melhorar a qualidade de vida e os resultados terapêuticos.

6.
Anesthesiol Clin ; 42(3): 393-406, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-39054015

RESUMEN

Like most complex aspects of procedural care, sound perioperative management of limits to life-sustaining medical therapy requires a multidisciplinary team-based approach bolstered by appropriate care management strategies. This article discusses the implications of care for the patient for whom limitations of life-sustaining care are in place and the roles and responsibilities of each provider in supporting quality procedural care compatible with patients' right to self-determination. The authors focus on the roles of the surgeon, preoperative clinic provider, anesthesiologist, and postoperative care consultants and discuss how the health care system and care pathways can support and improve adherence to best practices.


Asunto(s)
Atención Perioperativa , Humanos , Atención Perioperativa/métodos , Directivas Anticipadas , Cuidados para Prolongación de la Vida/métodos
7.
J Bioeth Inq ; 2024 Jul 22.
Artículo en Inglés | MEDLINE | ID: mdl-39037641

RESUMEN

The principle of non-directiveness remains an important tenet in genetics. However, the concept has encountered growing criticism over the last two decades. There is an ongoing discussion about its appropriateness for specific situations in genetics, especially in light of recent significant advancements in genetic medicine. Despite the debate surrounding non-directiveness, there is a notable lack of up-to-date international research empirically investigating the issue from the perspective of those who actually do genetic counselling. Addressing this gap, our article delves into the viewpoints and experiences of medical geneticists in Germany and Switzerland. Twenty qualitative interviews were analysed employing reflexive thematic analysis. Participants' responses revealed substantial uncertainties and divergences in their understanding and application of the concept. It seems to cause distress since many geneticists stated that the principle was difficult to put into clinical practice and was no longer ethically justified given the increasing likelihood of therapeutic implications resulting from genomic testing outcomes. The insights provided by our qualitative empirical study accord with the ongoing theoretical debate regarding the definition, legitimacy, and feasibility of the principle. An adequately nuanced understanding and application of non-directiveness seems crucial to circumvent the risks inherent in the principle, while promoting patient autonomy and beneficence.

8.
Healthcare (Basel) ; 12(13)2024 Jul 05.
Artículo en Inglés | MEDLINE | ID: mdl-38998876

RESUMEN

This study aims to assess the service quality and user satisfaction of a community support program (CSP) in a specific administrative region of Taiwan. Employing a cross-sectional design, data were collected from 450 CSP users in the region via a questionnaire. Statistical analyses, including descriptive analysis, ANOVA, and Scheffe's Test, were conducted using SPSS 22.0. The findings reveal that users aged 70-79 years with primary education, as well as those with demand or unknown demand for long-term care, reported the highest level of satisfaction with CSP services (mean = 4.5, SD = 0.7, p < 0.05). The study underscores the influence of user characteristics and their understanding of the services on satisfaction levels. These insights provide clear direction for policymakers in shaping the future of CSPs, emphasizing the importance of addressing user needs and enhancing awareness and the utilization of available services.

9.
Artículo en Español | LILACS-Express | LILACS | ID: biblio-1535343

RESUMEN

Introducción: La esclerosis lateral amiotrófica (ELA) es la forma más común de enfermedad degenerativa de motoneurona en la edad adulta y es considerada una enfermedad terminal. Por lo mismo, el accionar del fonoaudiólogo debe considerar el respeto a los principios bioéticos básicos para garantizar una asistencia adecuada. Objetivo: Conocer aquellas consideraciones bioéticas relacionadas al manejo y estudio de personas con ELA para luego brindar una aproximación hacia el quehacer fonoaudiológico. Método: Se efectuó una búsqueda bibliográfica en las bases de datos PubMed, Scopus y SciELO. Se filtraron artículos publicados desde 2000 hasta junio de 2023 y fueron seleccionados aquellos que abordaban algún componente bioético en población con ELA. Resultados: Aspectos relacionados al uso del consentimiento informado y a la toma de decisiones compartidas destacaron como elementos esenciales para apoyar la autonomía de las personas. Conclusión: Una correcta comunicación y una toma de decisiones compartida son claves para respetar la autonomía de las personas. A su vez, la estandarización de procedimientos mediante la investigación clínica permitirá aportar al cumplimiento de los principios bioéticos de beneficencia y no maleficencia, indispensables para la práctica profesional.


Introduction: Amyotrophic lateral sclerosis (ALS) is the most common form of degenerative motor neuron disease in adulthood and is considered a terminal disease. For this reason, the actions of the speech therapist must consider respect for basic bioethical principles to guarantee adequate assistance. Objective: To know those bioethical considerations related to the management and study of people with ALS to then provide an approach to speech therapy. Methodology: A bibliographic search was carried out in the PubMed, Scopus, and SciELO databases. Articles published from 2000 to June 2023 were filtered and those that addressed a bioethical component in the population with ALS were selected. Results: Aspects related to the use of informed consent and shared decision-making stood out as essential elements to support people's autonomy. Conclusion: Proper communication and shared decision-making are key to respecting people's autonomy. In turn, the standardization of procedures through clinical research will contribute to compliance with the bioethical principles of beneficence and non-maleficence, essential for professional practice.

10.
Invest. educ. enferm ; 42(1): 143-156, 20240408. tab
Artículo en Inglés | LILACS, BDENF - Enfermería, COLNAL | ID: biblio-1554628

RESUMEN

Objective.To verify the association between reproductive autonomy and sociodemographic, sexual, and reproductive characteristics in Quilombola women (a term indicating the origin of politically organized concentrations of Afro-descendants who emancipated themselves from slavery).Methods. Cross-sectional and analytical study with 160 women from Quilombola communities in the southwest of Bahia, Brazil. Data were collected using the Reproductive Autonomy Scale and the questionnaire from the National Health Survey (adapted).Results. Out of the 160 participating women, 91.9% declared themselves as black, one out of every three were aged ≤ 23 years, 53.8% were married or had a partner, 38.8% had studied for ≤ 4 years, over half (58.1%) were unemployed, only 32.4% had a monthly income > R$ 430 (80 US dollars), 52.5% had their first menstruation at the age of 12, 70.7% had not accessed family planning services in the last 12 months, and over half used some method to avoid pregnancy (59.0%). The women had a high level of reproductive autonomy, especially in the "Decision-making" and "Freedom from coercion" subscales with a score of 2.53 and 3.40, respectively. A significant association (p<0.05) was found between the "Total reproductive autonomy" score and marital status, indicating that single or unpartnered women had higher autonomy compared to married or partnered women. Conclusion.The association of social determinants of health such as marital status, education, and age impacts women's reproductive choices, implying risks for sexual and reproductive health. The intergenerational reproductive autonomy of Quilombola women is associated with sociodemographic and reproductive factors.


Objetivo. Verificar la asociación entre autonomía reproductiva y características sociodemográficas, sexuales y reproductivas en mujeres quilombolas (término que indica procedencia de concentraciones de afrodescendientes políticamente organizadas que se emanciparon de la esclavitud). Métodos. Estudio transversal y analítico con 160 mujeres de comunidades quilombolas del sudoeste de Bahía, Brasil. Los datos fueron recolectados utilizando la Escala de Autonomía Reproductiva y el cuestionario de la Encuesta Nacional de Salud (adaptado). Resultados. De las 160 mujeres participantes 91.9% se declararon negras, una de cada tres tenía edad ≤ 23 años, 53.8% estaban casada o tenían pareja, 38.8% había estudiado por ≤ 4 años, más de la mitad (58.1%) no trabajaba, solo 32.4% tenía renta > R$ 430 mensual (87 $US dólares), el 52.5% tuvo la primera menstruación a los 12 años, 70.7% no había acudido a servicios de planificación familiar en los últimos 12 meses y más de la mitad usaba algún método para evitar embarazo (59%). Las mujeres tuvieron un alto nivel de autonomía reproductiva, especialmente en las subescalas "Toma de decisiones" y "Ausencia de coerción" con una puntuación de 2.53 y 3.40, respectivamente. Se encontró asociación significativa (p<0.05) entre la puntuación de "Autonomía reproductiva total" con el estado civil, indicando el análisis que las mujeres solteras o sin pareja tenían mayor autonomía en comparación con las casadas o con pareja. Conclusión. La asociación de determinantes sociales de la salud como el estado civil, la escolaridad y la edad interfieren en las opciones reproductivas de las mujeres, implicando riesgos para la salud sexual y reproductiva. La autonomía reproductiva intergeneracional de las mujeres quilombolas está asociada a factores sociodemográficos y reproductivos.


Objetivo. Verificar a associação entre a autonomia reprodutiva e características sociodemográficas, sexuais e reprodutivas em mulheres quilombolas (termo que indica a origem de concentrações politicamente organizadas de pessoas de ascendência africana que se emanciparam da escravatura). Métodos. Estudo transversal e analítico com 160 mulheres (80 mães e 80 filhas) de comunidades quilombolas no sudoeste baiano, no Brasil. Os dados foram construídos através da aplicação da Escala de Autonomia Reprodutiva e do questionário da Pesquisa Nacional de Saúde (adaptado). Resultados. das 160 mulheres participantes 91.9% se autodeclararam negra, a maioria com idade ≤ 23 anos (35.6%), 53.8% são casadas ou com companheiro, 38.8% com estudos ≤ 4 anos, mais da metade (58.1%) não trabalham, apenas 32.4% têm renda > R$ 430, a maioria teve a primeira menstruação até os 12 anos de idade (52.5%), não participou de grupo de planejamento familiar nos últimos 12 meses (70.7%), mais da metade utilizava método para evitar a gravidez (59%). Apresentaram elevada autonomia reprodutiva, com destaque para as subescalas "Tomada de decisão" e "Ausência de coerção" medindo 2.53 e 3.40, respectivamente. Encontrou-se associação significativa (p<0.05) entre o escore de "Autonomia reprodutiva total" e estado conjugal, com a análise indicando que mulheres solteiras ou sem companheiro apresentaram maior autonomia, comparadas às mulheres casadas ou com companheiro. Conclusão. A associação dos determinantes sociais de saúde como estado civil, menarca, escolaridade e idade interferem nas escolhas reprodutivas das mulheres, implicando em riscos à saúde sexual e reprodutiva. A autonomia reprodutiva intergeracional das mulheres quilombolas está associada a fatores sociodemográficos e reprodutivos.


Asunto(s)
Humanos , Mujeres , Encuesta Socioeconómica , Autonomía Personal , Salud Reproductiva , Quilombola
11.
Ann Fam Med ; 22(2): 103-112, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38527820

RESUMEN

PURPOSE: Many individuals who are eligible for lung cancer screening have comorbid conditions complicating their shared decision-making conversations with physicians. The goal of our study was to better understand how primary care physicians (PCPs) factor comorbidities into their evaluation of the risks and benefits of lung cancer screening and into their shared decision-making conversations with patients. METHODS: We conducted semistructured interviews by videoconference with 15 PCPs to assess the extent of shared decision-making practices and explore their understanding of the intersection of comorbidities and lung cancer screening, and how that understanding informed their clinical approach to this population. RESULTS: We identified 3 themes. The first theme was whether to discuss or not to discuss lung cancer screening. PCPs described taking additional steps for individuals with complex comorbidities to decide whether to initiate this discussion and used subjective clinical judgment to decide whether the conversation would be productive and beneficial. PCPs made mental assessments that factored in the patient's health, life expectancy, quality of life, and access to support systems. The second theme was that shared decision making is not a simple discussion. When PCPs did initiate discussions about lung cancer screening, although some believed they could provide objective information, others struggled with personal biases. The third theme was that ultimately, the decision to be screened was up to the patient. Patients had the final say, even if their decision was discordant with the PCP's advice. CONCLUSIONS: Shared decision-making conversations about lung cancer screening differed substantially from the standard for patients with complex comorbidities. Future research should include efforts to characterize the risks and benefits of LCS in patients with comorbidities to inform guidelines and clinical application.


Asunto(s)
Detección Precoz del Cáncer , Neoplasias Pulmonares , Humanos , Neoplasias Pulmonares/diagnóstico , Toma de Decisiones , Multimorbilidad , Calidad de Vida , Atención Primaria de Salud
13.
Front Public Health ; 12: 1334988, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38384883

RESUMEN

Objective: Utilizing self-directed strategies for maintaining and managing healthy lifestyle habits is efficient, and it is essential to consider individual motivation, as it is a factor that directly influences the adoption and maintenance of healthy behaviors. The study aimed to assess the effects of a mobile-based autonomy support program on basic psychological needs, autonomous motivation, health behavior, and metabolic syndrome indicators in middle-aged women. Methods: This study was a non-randomized controlled trial with a pre-test and post-test design, focused on validating a mobile-based autonomy-supportive program to prevent metabolic syndrome in middle-aged women. The experimental group participated in a 12-week mobile-based autonomy support program, which included components such as education, physical activity guidance, dietary management, and real-time data monitoring. In contrast, the control group was provided with comparable educational resources. Assessments of basic psychological needs, autonomous motivation, health behavior, and metabolic syndrome indicators were conducted at baseline and again at the 12-week mark. Results: After a 12-week period, the experimental group demonstrated significant enhancements in autonomy (p = 0.004) and competence (p < 0.001), two key dimensions of basic psychological needs. Autonomous motivation (p < 0.001) and health behavior scores (p < 0.001) were also significantly higher in the experimental group, while waist circumference (p = 0.048) and systolic blood pressure (p = 0.011) were significantly reduced. Other variables such as relatedness, high-density cholesterol, fasting blood sugar, diastolic blood pressure, and neutral fat scores were also improved in the experimental group, but these changes were not statistically significant. Conclusion: The autonomy support program offers a cost-effective and community-accessible health care strategy for middle-aged women and may be integrated into various nursing practices.


Asunto(s)
Síndrome Metabólico , Persona de Mediana Edad , Humanos , Femenino , Síndrome Metabólico/prevención & control , Conductas Relacionadas con la Salud , Motivación , Estilo de Vida
14.
J Med Ethics ; 50(7): 498-500, 2024 Jun 21.
Artículo en Inglés | MEDLINE | ID: mdl-38290854

RESUMEN

Resnik and Pugh recently explored the ethical implications of routinely integrating environmental concerns into clinical decision-making. While we share their concern for the holistic well-being of patients, our response offers a different clinical and bioethical stance on green informed consent and patient autonomy. Contrary to the authors' lack of data to support their concerns about provider and patient willingness to engage in climate-related conversations, we provide evidence supporting their sustainability engagement and stress the importance of a proactive, anticipatory approach in healthcare to align with evolving societal values. If climate change is perceived as a politicised issue, though it is not inherently so, healthcare providers are professionally trained to address sensitive subjects and have a duty to inform patients about potential health risks. Recognising the environmental crisis as a health crisis underscores the direct connection between environmental hazards and patients' well-being. Our perspective advocates for integrating individual considerations, societal responsibilities and systemic changes to promote environmentally sustainable healthcare.


Asunto(s)
Cambio Climático , Toma de Decisiones Clínicas , Consentimiento Informado , Autonomía Personal , Humanos , Consentimiento Informado/ética , Toma de Decisiones Clínicas/ética , Conservación de los Recursos Naturales
15.
Healthcare (Basel) ; 12(2)2024 Jan 05.
Artículo en Inglés | MEDLINE | ID: mdl-38255015

RESUMEN

The relationship between attentional resources and functionality in individuals with intellectual disabilities (IDs) is clinically relevant. This study aimed to examine the possible relationship between the degree of ID and attentional resources, and to evaluate whether attentional resources predict the performance of basic and instrumental activities of daily living (ADL) in individuals with mild and moderate ID. This study, which employed a descriptive, cross-sectional, observational design, was conducted between July 2019 and May 2020. The sample consisted of 166 individuals divided into three groups: moderate ID, mild ID, and those without ID. These groups were compared for attentional functions (p < 0.001), obtaining an effect size ranging from medium to large. The results indicated that 40% of the variance in basic ADL performance was explained by the age of the participants, degree of disability, and sustained attention in individuals with ID. Additionally, 64% of the variance in instrumental ADL performance was explained by sustained, divided, and executive attention. Therefore, attentional resources appear to be associated with the performance of basic and instrumental ADL in individuals with mild and moderate ID.

16.
HEC Forum ; 2024 Jan 27.
Artículo en Inglés | MEDLINE | ID: mdl-38280180

RESUMEN

Patients with mental illness, and depression in particular, present clinicians and surrogate decision-makers with complex ethical dilemmas when they refuse life-sustaining non-psychiatric treatment. When treatment rejection is at variance with the beliefs and preferences that could be expected based on their premorbid or "authentic" self, their capacity to make these decisions may be called into question. If capacity cannot be demonstrated, medical decisions fall to surrogates who are usually advised to decide based on a substituted judgment standard or, when that is not possible, best interest. We propose that in cases where the patient meets the widely accepted cognitive criteria for capacity but is making decisions that appear inauthentic, the surrogate may best uphold patient autonomy by following a "restorative representation" model. We see restorative representation as a subset of substituted judgement in which the decision-maker retains responsibility for deciding as the patient would have, but discerns the decision their "truest self" would make, rather than inferring their current wishes, which are directly influenced by illness. Here we present a case in which the patient's treatment refusal and previously undiagnosed depression led to difficulty determining the patient's authentic wishes and placed a distressing burden on the surrogate decision-maker. We use this case to examine how clinicians and ethicists might better advise surrogates who find themselves making these clinically and emotionally challenging decisions.

17.
Med Health Care Philos ; 27(1): 71-80, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-38212572

RESUMEN

Etymologically, autonomy is the ability to give oneself rules and follow them. It is an important principle of medical ethics, which can sometimes raise some tensions in the care relationship. We propose a new definition of ethics, the ethics of heteronomy: a self-normative, discursive and responsible autonomy. Autonomy cannot be considered without the responsibility each person must have towards others. In the care relationship, autonomy would be more the ability of each person to reach out to others than the ability to decide alone. The care relationship must be seen as an accompaniment of equals where each person allows the other to be rephrased. Autonomy would then no longer be absolute but relative to each situation. Being autonomous would become an ability for adaptation of the patient-doctor pair. The accompaniment allows the birth of a relationship of trust, giving the patient and the doctor the ability to touch and let themselves be touched, thus making each one progress in this reciprocal dialectic. The care relationship becomes the possibility of considering autonomy as a collective and not as an individual notion only. Paradoxically, by promoting the autonomy of the patient-doctor pair, they both develop their own autonomy.


Asunto(s)
Ética Médica , Autonomía Personal , Humanos
18.
Aust Occup Ther J ; 71(1): 88-101, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-37861243

RESUMEN

INTRODUCTION: Self-determination is a core component of mental health recovery and a predictor of positive outcomes. The literature calls for occupational therapists to lead practice change to greater recovery-orientation, including facilitating people's self-determination. However, systemic challenges thwart translation of policy into practice and therapists report a lack of confidence in implementing recovery-oriented principles. This study aimed to understand the strategies that mental health occupational therapists employ to support people's self-determination. METHODS: Data were collected through an international on-line questionnaire principally comprising two open-ended questions designed to elicit deep reflective personal accounts. Participants were asked about an experience in which they supported a person's self-determination and the factors that either facilitated or hindered this experience. Qualitative data were analysed using inductive thematic analysis, guided by constant comparative methods. FINDINGS: Thirty-four therapists, predominantly from Australia (n = 30), participated. Therapists described supporting self-determination as a multifaceted process that involved: (1) working on myself, (2) working with the person, and (3) working with others. They emphasised that the combined use of various strategies across these three areas of work was important to support people's self-determination. Further, awareness of and addressing issues of power in their practice was key. CONCLUSION: This study supports the translation of recovery-oriented principles into practice by revealing the nuanced strategies implemented by occupational therapists striving to support self-determination. Participants employed diverse strategies to empower people to take the 'driver's seat' in their mental health recovery journey. Insights from this study will support other occupational therapists to actualise recovery-oriented principles and better support self-determination in their practice. To effectively implement self-determination strategies, therapists must reflect on and address existing power differentials within mental health services, particularly between themselves and the people they support.


Asunto(s)
Recuperación de la Salud Mental , Terapia Ocupacional , Humanos , Terapeutas Ocupacionales/psicología , Salud Mental , Australia
19.
J Med Ethics ; 50(3): 195-200, 2024 Feb 20.
Artículo en Inglés | MEDLINE | ID: mdl-37137696

RESUMEN

Disease radically changes the life of many people and satisfies formal criteria for being a transformative experience. According to the influential philosophy of Paul, transformative experiences undermine traditional criteria for rational decision-making. Thus, the transformative experience of disease can challenge basic principles and rules in medical ethics, such as patient autonomy and informed consent. This article applies Paul's theory of transformative experience and its expansion by Carel and Kidd to investigate the implications for medical ethics. It leads to the very uncomfortable conclusion that disease involves transformative experiences in ways that can reduce people's rational decision-making ability and undermine the basic principle of respect for autonomy and the moral rule of informed consent. While such cases are limited, they are crucial for medical ethics and health policy and deserve more attention and further scrutiny.


Asunto(s)
Consentimiento Informado , Autonomía Personal , Humanos , Ética Médica , Principios Morales , Filosofía
20.
J Soc Work End Life Palliat Care ; 20(1): 83-114, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-37382889

RESUMEN

The aim of this review was to identify, assess, collate, and analyze existing research that has made a direct contribution to aiding understanding of the ethical and decision-making issues related to the use of advance care directives for people with dementia and/or other major neurocognitive disorders and/or their surrogate decision-makers on treatment. The Web of Science, Scopus, PubMed, CINAHL, Academic Search Ultimate, and MEDLINE databases were searched between August and September 2021 and July to November 2022 limited to primary studies written in English, Spanish, or Portuguese. Twenty-eight studies of varying quality that addressed related thematic areas were identified. These themes being support for autonomy in basic needs (16%), making decisions ahead/planning ahead and upholding these decisions (52%), and support in decision-making for carers (32%). Advance care directives are an important mechanism for documenting treatment preferences in patient care planning. However, the available literature on the topic is limited in both quantity and quality. Recommendations for practice include involving decision makers, promoting educational interventions, exploring how they are used and implemented, and promoting the active involvement of social workers within the healthcare team.


Asunto(s)
Disfunción Cognitiva , Demencia , Humanos , Anciano , Toma de Decisiones , Demencia/terapia , Directivas Anticipadas , Cuidadores/psicología
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