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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.
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La adecuación del esfuerzo terapéutico reemplaza la expresión limitación terapéutica y se define como la decisión de no iniciar medidas diagnósticas y terapéuticas o de suspenderlas en respuesta a la condición del paciente, para evitar conductas potencialmente inapropiadas y redireccionar los objetivos de tratamiento hacia el confort y el bienestar. En la población pediátrica, esta decisión es aún más desafiante debido a la naturaleza de la relación médico-paciente-familia y a la escasez de guías que orienten su implementación. La adecuación del esfuerzo terapéutico está enmarcada en principios éticos y legales, pero existen diversos retos a nivel práctico. Cada proceso de adecuación es único y dinámico, y debe abordarse contemplando a quién realizarlo, cuándo, cómo y con qué medidas.
The term "therapeutic limitation" has been replaced by "adequacy of therapeutic effort" and is defined as the decision to withhold or withdraw diagnostic and therapeutic measures in response to the patient's condition, avoiding potentially inappropriate behaviors and redirectong treatment goals towards comfort and well-being. In the pediatric population, this decision is even more challenging given the nature of the physician-patient-family relationship and the paucity of guidelines to address treatment goals. The adequacy of therapeutic effort is framed by ethical and legal principles, but, in practice, there are several challenges. Each adequacy process is unique and dynamic, and should be addressed by taking into account with what measures, how, when, and in whom it should be implemented
Subject(s)
Humans , Physician-Patient Relations , Withholding Treatment , Decision MakingABSTRACT
Objective:To systematically evaluate and integrate the qualitative research of the practical experience and practical difficulties of advance care planning (ACP), so as to provide a reference for subsequent clinical nurses to better carry out ACP.Methods:PubMed, Web of Science, Embase, Cochrane Library, CINAHL, CNKI, Wanfang, VIP, Chinese Biomedical Literature Database were collected the qualitative research on the practical experience and practical difficulties of nurses′advance care planing, and the search time was the database establishment until August 1, 2022. Literature quality evaluation was conducted by the Joanna Briggs Institute (JBI) (2016), and the results were summarized using Meta integration method.Results:A total of 13 studies were included, and 39 studies were summarized into 11 new categories, forming 4 integrated results: nurses′ cognition of ACP practice, emotional experience of nurses′ ACP practice, personal factors that hinder ACP practice, and external environmental factors that hinder ACP practice.Conclusions:In ACP practice, nurses should be actively guided to have positive cognitive and emotional experience to improve their competence in ACP practice. At the same time, government departments should be united to support, integrate hospitals, society and other forces to formulate coping strategies against obstacles, so as to promote the development and practice of ACP.
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Objective:To systematically evaluate the effect of decision aid tools for advance care planning (ACP) in patients with cancer.Methods:Randomized controlled trials about the effect of decision aid tools for ACP in patients with cancer were retrieved from Embase, PubMed, CINAHL, the Cochrane Library, PsycINFO, Chinese Biomedical Literature Database, VIP, China National Knowledge Internet and Wanfang Data. The retrieval time was from inception to February 23, 2022. Literature screening, quality evaluation and data consolidation were carried out independently by two researchers. Then, RevMan 5.3 software was used for Meta analysis.Results:A total of 13 researches were included, involving 2 151 cancer patients. Meta-analysis showed that the signing of advance directives ( OR=1.81, 95% CI 1.22-2.69, Z=2.95, P<0.01) and knowledge scores related to ACP( MD=0.58, 95% CI 0.35-0.81, Z=4.90, P<0.01) in experimental group was higher than that in control group, but receiving cardiopulmonary resuscitation treatment before death ( MD=0.33, 95% CI 0.21-0.53, Z=4.64, P<0.01) and the level of decision confliction ( MD=-3.69, 95% CI-6.43--0.95, Z=2.64, P<0.01) in experimental group was lower than those in control group, and the differences were statistically significant. Conclusions:Existing evidence shows that decision aid tools can improve cancer patients′ awareness of ACP, help patients to join in ACP discussions and sign advanced directives, reduce patients' preference for cardiopulmonary resuscitation treatment before death and reduce decision-making conflicts.
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Abstract Data on advance directives in Brazil are lacking. This study aims to assess the understanding of oncologists regarding advance directives and the frequency with which they discuss advance directives and advance care planning with their patients in Brazil. This is an observational, descriptive and cross-sectional study, conducted with cclinical oncologists associated with the Brazilian Society of Clinical Oncology. Participants were invited to answer a questionnaire prepared by the authors. In total, 72 physicians answered the questionnaire, of which 73% were under 45 years old and 56% worked in oncology for less than 10 years. Regarding the limits of intervention and end-of-life care during treatment, 54.2% of respondents reported not discussing it. Although 67% of oncologists know the term advance directives, they do not develop them with their patients and 57.2% do not perform advance care planning. Most oncologists in this study do not set advance care planning and advance directives for most patients.
Resumen Dada la escasa información sobre directivas anticipadas en Brasil, este estudio analiza si los oncólogos conocen las directivas anticipadas y si discuten el tema con sus pacientes o realizan la planificación anticipada de atención. Este es un estudio observacional, descriptivo y transversal, realizado con oncólogos clínicos afiliados a la Sociedad Brasileña de Oncología Clínica. Se aplicó un cuestionario elaborado por los autores. Participaron 72 médicos; el 73% tenían menos de 45 años y el 56% llevaban trabajando menos de diez años en oncología. Respecto a los límites de la intervención y los cuidados al final de la vida durante el tratamiento, el 54,2% de los participantes no trataban del tema. Aunque el 67% de ellos están familiarizados con el término, no lo comentan con sus pacientes, y el 57,2% no realizan una planificación anticipada de atención. La mayoría de los oncólogos no hacen la planificación anticipada de atención ni las directivas anticipadas.
Resumo Considerando a escassez de informações sobre diretivas antecipadas no Brasil, este estudo investiga a compreensão de oncologistas quanto a diretivas antecipadas e a frequência com que discutem sobre diretivas antecipadas e planejamento antecipado de cuidados com seus pacientes. Um estudo observacional, descritivo e transversal foi conduzido com oncologistas clínicos afiliados à Sociedade Brasileira de Oncologia Clínica. Os participantes foram convidados a responder a um questionário preparado pelos autores. No total, 72 médicos responderam ao questionário, dos quais 73% tinham menos de 45 anos de idade e 56% trabalhavam em oncologia há menos de 10 anos. Com relação aos limites de intervenção e cuidados de fim de vida durante o tratamento, 54,2% dos entrevistados relataram não discutir o assunto. Embora 67% dos oncologistas conheçam o termo diretivas antecipadas, eles não as discutem com seus pacientes e 57,2% não realizam planejamento antecipado de cuidados. A maioria dos oncologistas deste estudo não estabelece planejamento de cuidados antecipados e diretivas antecipadas para a maioria dos pacientes.
Subject(s)
Palliative CareABSTRACT
End-stage renal disease is the final stage of chronic kidney disease, and research on palliative care for end-stage renal disease patients in China is still in its infancy. The research content of palliative care for end-stage renal disease at home and abroad mainly includes identification and management of symptoms, advance care planning, psychosocial and spiritual support, and ethical issues in dialysis decision-making. However, practical experience is still insufficient. By focusing on the overview, development status, patient needs, as well as implementation forms and models of palliative care for endstage renal disease patients, this paper summarized the research progress and application status of related research, with a view to providing references for future domestic research and clinical practice in this field.
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Advance care planning (ACP) is an important part of hospice care, a core index of high-quality palliative care, and one of the effective indicators for improving the life quality of end-of-life patients. By reviewing the progress of various theoretical models and their applications in ACP, including planned behavior theory, behavioral change wheel theory, self-determination theory, prospect theory, change theory, and cultural suitability theory, this paper delved into the advantages and limitations of each theoretical model and analyzed its research prospects in future ACP clinical practice to promote researchers’ correct understanding of the role of different theoretical models in various types of studies, with a view to providing new ideas for clinical research on ACP.
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With the aggravation of global aging process and the strengthening of patients’ awareness of rights, the realization of the elderly and end-of-life patients’ right to know and autonomy, and the satisfaction of physical and mental needs have become new indicators to measure social development. Advance care plan focuses on the discussion process of patients, their families and medical staff on end-of-life medical decisions and death intentions, which greatly promotes the development concept of palliative care and optimal death. To promote this process in the context of traditional Chinese culture, it is also necessary to combine with the local family concept and collectivism. Therefore, this paper introduced a sustainable social support system involving multiple subjects such as families, communities, social workers, and legal workers, with a view to benefiting the elderly and end-of-life patients.
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Abstract Introduction Patients with head and neck cancer (HNC) experience unique physical and psychosocial challenges that impact their health and quality of life. Early implementation of palliative care has been shown to improve various health care outcomes. Objective The aim of the present study was to evaluate the patterns of referral of patients with HNC to outpatient palliative care as they relate to utilization of resources and end-of-life discussions. Methods We performed a retrospective review of 245 patients with HNC referred to outpatient palliative care services at two Louisiana tertiary care centers from June 1, 2014, to October 1, 2019. The control group consisted of those that were referred but did not follow-up. Reasons for referral were obtained, and outcome measures such as emergency department (ED) visits, hospital readmissions, and advance care planning (ACP) documentation were assessed according to predictive variables. Results There were 177 patients in the treatment group and 68 in the control group. Patients were more likely to follow up to outpatient palliative care services if referred for pain management. Hospital system, prior inpatient palliative care, and number of outpatient visits were associated with an increased likelihood for ED visits and hospital readmissions. Those in the palliative care treatment group were also more likely to have ACP discussions. Conclusion Early implementation of outpatient palliative care among patients with HNC can initiate ACP discussions. However, there are discrepancies in referral reasons to palliative care and continued existing barriers to its effective utilization.
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Resumo O planejamento antecipado de cuidados é um processo de discussões entre profissionais de saúde e pacientes que permite a tomada de decisão compartilhada quanto a objetivos de cuidados de saúde, atuais e/ou futuros, com base nos desejos e valores do paciente e em questões técnicas do cuidado. É considerado fundamental na prestação de cuidados de excelência em fim de vida, permitindo que profissionais de saúde alinhem os cuidados prestados com o que é mais importante para o paciente. Apesar de seus benefícios, ainda é muito pouco realizado na prática clínica, especialmente no Brasil. Considerando a necessidade de guias práticos de planejamento antecipado de cuidados adaptados à realidade brasileira, pautados em estratégias de comunicação empática, este estudo é uma proposta de guia baseada em revisão integrativa da literatura (PubMed e SciELO), com recomendações de evidências atuais, incluindo instrumentos validados para o português (Brasil), para facilitar sua implementação na prática clínica.
Abstract Advance care planning is a process of discussion between healthcare professionals and patients that enables shared decision-making on current and/or future healthcare goals, based on patients' desires and values and technical care issues. Advance care is considered essential in the provision of quality terminal care, allowing healthcare professionals to align the care provided with what is most important to the patient. Despite its benefits, it is still underused in clinical practice, especially in Brazil. Considering the need for practical guides for advance care planning adapted to the Brazilian reality, drawing on empathetic communication strategies, this study is a guide proposal based on an integrative literature review (PubMed and SciELO), with recommendations of current evidence, including instruments validated for Portuguese (Brazil), to facilitate its implementation in clinical practice.
Resumen La planificación anticipada de atención es un proceso de discusión entre los profesionales de la salud y los pacientes que permite la toma de decisiones relacionadas a los objetivos de atención médica actuales y/o futuros, basadas en los deseos y valores del paciente y en cuestiones técnicas de la atención. Resulta ser una apropiada atención terminal, ya que estos profesionales pueden adecuar la atención con los deseos del paciente. Pese a sus beneficios, es poco realizada en la práctica clínica, especialmente en Brasil. Dada la necesidad de guías prácticas para la planificación anticipada de atención, adaptadas a la realidad brasileña y basadas en estrategias comunicativas empáticas, este estudio propone una guía a partir de una revisión integradora de la literatura (PubMed y SciELO), con recomendaciones de evidencia actual, incluidos instrumentos validados para el portugués brasileño para facilitar su aplicación en la práctica clínica.
Subject(s)
Palliative Care , Terminal Care , Brazil , Health Personnel , Communication , Medical Care , Advance Care Planning , Decision Making, SharedABSTRACT
This case study discusses a dispute between the healthcare team and the patient’s surrogate decision maker at a cancer centre. While the healthcare team deemed further care to be futile, the patient’s husband argued that they should continue to try to reverse his wife’s acute decline. This case study illustrates the inertia and moral distress that can result when there are differences between patients/surrogates and the healthcare team in their goals for intensive care. The issues of moral distress and an inability to make decisions were addressed by involving an ethics consultant, and by creating institutional mechanisms to address end-of-life issues at an earlier stage
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Las mejoras en la calidad de vida de la población y los avances de la medicina han contribuido al aumento de la sobrevida de niños y adolescentes, así como también un aumento progresivo de niños con enfermedades o condiciones de salud crónicas, complejas, dependientes de dispositivos médicos y/o tecnología, que conviven con la posibilidad de complicaciones que amenazan sus vidas. Esta situación implica múltiples desafíos en los procesos de toma de decisiones respecto a la pertinencia y proporcionalidad de medidas diagnósticas, terapéuticas y de monitorización, considerando el beneficio real y/o la carga de sufrimiento, que las mismas pueden determinar en la calidad de vida del niño y su familia. En los últimos años, en el marco de la atención sanitaria, se han incorporado los conceptos y procedimientos de planificación avanzada del cuidado (PAC) y limitación o adecuación del esfuerzo terapéutico (AET) que se presentan. El objetivo de este documento es describir las definiciones básicas de conceptos necesarios para comprender e implementar procesos de PAC y AET, el marco bioético y legal para dichos procesos, el procedimiento para la implementación de la definición de directivas de adecuación del esfuerzo terapéutico (DAET), elaborado por la Unidad de Cuidados Paliativos Pediátricos del Centro Hospitalario Pereira Rossell.
Improvements in the populations's quality of life and medical progress have contributed to the increase of survival rates of children and adolescents, as well as to a progressive rise in children with chronic, complex diseases or health conditions, dependent on medical devices and / or technology, who live with the possibility of life-threatening complications. This situation brings multiple challenges in the decision-making processes regarding the relevance and proportionality of diagnostic, therapeutic and monitoring measures, considering the real benefit and / or the burden that they can cause in the quality of life of the child and his family. In recent years, within the framework of health care, the concepts and procedures of advanced care planning and limitation or adequacy of therapeutic effort (ATE) have been incorporated. The aim of this paper is to describe the basic definitions needed to understand and implement ATE processes, the bioethical and legal framework for such processes, the procedure for the implementation of the definition of Directives for the Adequacy of Therapeutic Effort (DATE), prepared by the Pediatric Palliative Care Unit of the Pereira Rossell Hospital Center.
Melhoras na qualidade de vida da população e avanços na medicina têm contribuído para o aumento da sobrevida de crianças e adolescentes, bem como um aumento progressivo de crianças com doenças crônicas, complexas ou condições de saúde dependentes de dispositivos médicos e/ou tecnologia, que convivem com a possibilidade de complicações que ameaçam suas vidas. Essa situação traz consigo múltiplos desafios nos processos decisórios quanto à relevância e proporcionalidade das medidas diagnósticas, terapêuticas e de monitoramento, considerando o real benefício e/ou a carga de sofrimento, que podem determinar na qualidade de vida da criança e de sua família. Nos últimos anos, no âmbito da atenção à saúde, foram incorporados os conceitos e procedimentos de: planejamento avançado da atençaÌo e limitaçaÌo o adequaçaÌo do esforço terapeÌutico (AET). O objetivo deste documento é descrever: as definições básicas de conceitos necessários para à compreensão e implementação dos processos da PAC e AET, do marco bioético e legal para tais processos, do procedimento para a implementação da definição de diretrizes para a adequação do esforço terapêutico (DAET) elaborado pela Unidade de Cuidados Paliativos Pediátricos do Centro Hospitalar Pereira Rossell.
Subject(s)
Humans , Child , Adolescent , Chronic Disease , Advance Directives , Advance Care Planning , Decision Making, Shared , Health Services Needs and DemandABSTRACT
With the rapid development of hospice care, more and more people pay attention to the quality of life of patients at the end of life. Due to the dialysis-related complications, heavy burden of comorbidities and cognitive impairment, elderly hemodialysis patients have poor quality of life, which brings heavy physiological, psychological and economic burdens to patients, families and society. Advance care planning can improve patients′ quality of life and save limited medical resources. By referring to relevant literature at home and abroad, this paper reviewed the overview of advance care planning, the necessity of discussing advance care planning with elderly hemodialysis patients, the implementation status and the obstacle factors. The purpose was to provide theoretical reference for better implementation of intervention treatment in elderly hemodialysis patients in China in the future.
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Purpose: This study clarified the general public’s end-of-life decision-making expectations and related factors. Method: We analyzed secondary data of 1,000 adults surveyed through the Internet. The outcome was to determine the life expectancy at the end of life, end-of-life care, and decision-makers’ wishes. Results: Regarding the prognosis, 54% wanted to know the life expectancy in end-of-life. This preference was independently associated with being notified of cancer at a young age, trust in medical professionals, and the view of life and death that disappears. Regarding end-of-life care preferences, 11% requested active treatment, and 58% requested palliative care. This preference was independently associated with older age, women, and an emphasis on being pain-free and being yourself. Regarding decision-makers’ preferences, 77% wanted to decide for themselves, and 11% wanted to decide for their families. This preference was independently associated with the young, carefree of life and death, who did not want to be notified of cancer. Conclusion: We revealed the general public’s desire for end-of-life decision-making and associated factors. In clinical practice, it can be used for screening.
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Objective:To investigate the application value of advance care planning among patients with chronic heart failure, so as to provide reference for the clinical practice of advance care planning.Methods:A total of 62 chronic heart failure patients from October 2017 to November 2019 in Fuwai Central China Cardiovascular Hospital were assigned to control group and experimental group according to the enrolled time, with 31 cases in each group. The patients in the control group from October 2017 to October 2018 recieved routine nursing, the experimental group from November 2018 to November 2019 carried out advance care planning based on the routine care. Before and after 3 weeks of intervention, the fatigue symptom and psychological condition were assessed by the Multidimensional Fatigue Inventory (MFI-20) and Symptom Checklist 90 (SCL-90), respectively.Results:There was no significant difference in the score of MFI-20 and SCL-90 before intervention between the two groups( P>0.05). After 3 weeks of intervention, the mental fatigue scores and total scores in MFI-20 were (8.23 ± 2.77), (51.00 ± 5.03) points in the experimental group, significantly lower than those in the control group (10.23 ± 2.58), (54.06 ± 5.50) points, the differences were statistically significant ( t=2.94, 2.29, all P<0.05). After 3 weeks of intervention, the somatization, obsessive symptoms, depression, anxiety, hostility scores and total score of SCL-90 were (1.28 ± 0.14), (1.43 ± 0.09), (1.19 ± 0.12), (1.13 ± 0.08), (1.33 ± 0.07), (121.00 ± 3.68) points in the experimental group, significantly lower than those in the control group (1.82 ± 0.44), (1.73 ± 0.58), (1.69 ± 0.12), (1.78 ± 0.13), (1.39 ± 0.10), (144.69 ± 9.09) points, the differences were statistically significant ( t values were 2.76-23.06, all P<0.05). Conclusions:Advance care planning can effectively alleviate fatigue symptom and improve psychological condition of patients with chronic heart failure.
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ABSTRACT Objective: Description and discussion dimensions of Integrated Care Model. Methods: A descriptive study is done that describe a technological innovation, intervention strategies for professional performance. Results: Integrated Care Model (ICM) has two main categories include individual and Group-and disease-specific Model. First, is used for risky patients or with comorbidities. In second category; Chronic Care Model (CCM) is common form of Integrated Care Model to improve resultants in the patients with chronic condition, to move from acute care to integrate, regular, long-lasting, preventative and community-based nursing. Final considerations: It is important to consider patient as an active member of the treatment team. It seems to be essential to monitor performance of care system. On the other hand, offer multidisciplinary care leads to present desirable care, tailored to the specific needs of patients regarding safety, patient-centered care and their culture.
RESUMO Objetivo: Descrever e discutir dimensões do Modelo Integrado de Atenção. Métodos: Estudo descritivo que descreve uma inovação tecnológica, estratégias de intervenção para atuação profissional. Resultados: O Modelo de Cuidados Integrados (ICM) tem duas categorias principais: Modelo individual e Modelo específico para grupos e doenças. Primeiro, é usado para pacientes de alto risco e / ou com várias doenças. Na segunda categoria; O Modelo de Cuidado Crônico (CCM) é a forma mais conhecida de Modelo de Cuidados Integrados para melhorar os resultados em pacientes com condição crônica, para passar do cuidado agudo para a enfermagem integrada, regular, duradoura, preventiva e baseada na comunidade. Considerações finais: É importante considerar o paciente como um membro ativo da equipe de tratamento. Parece ser essencial monitorar o desempenho do sistema de atendimento. Por outro lado, oferecer assistência multidisciplinar leva a apresentar cuidados desejáveis, adequados às necessidades específicas dos pacientes quanto à segurança, ao cuidado centrado no paciente e à sua cultura.
RESUMEN Objetivo: Descripción y dimensiones de discusión del Modelo de Atención Integrada. Métodos: Estudio descriptivo que describe una innovación tecnológica, estrategias de intervención para el desempeño profesional. Resultados: El modelo de atención integrada (ICM) tiene dos categorías principales, que incluyen el modelo individual y grupal y específico de la enfermedad. Primero, se usa para pacientes de alto riesgo y / o con múltiples condiciones. En segunda categoría; El Modelo de Cuidados Crónicos (CCM) es la forma más conocida de modelo de atención para mejorar los resultados en los pacientes con enfermedad crónica, para pasar de cuidados agudos a una enfermería integral, regular, duradera, preventiva y comunitaria. Consideraciones finales: Es importante considerar al paciente como un miembro activo del equipo de tratamiento. Parece esencial monitorear el desempeño del sistema de atención. Por otro lado, ofrecer una atención multidisciplinar conduce a presentar una atención deseable, adaptada a las necesidades específicas de los pacientes en cuanto a seguridad, atención centrada en el paciente y su cultura.
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Objective: The non-medical needs of patients, such as values and personal preferences, are likely to be omitted from advance care planning (ACP) discussions because of a lack of readiness and awareness on the part of healthcare professionals. The aim of the present study was to identify core components perceived by multidisciplinary healthcare professionals to improve person-centered ACP conversations with older people.Methods: The study participants were healthcare professionals (physicians, nurses, and care managers) working in different cities. This qualitative study was performed online using eight individual in-depth interviews and one subsequent focus group composed of eight healthcare professionals. The interviews and focus group discussion were audio-recorded online and transcribed verbatim. The aim of the analysis of the individual in-depth interviews was to summarize the transcribed results, create a conceptual framework for person-centered ACP conversation, and provide meaningful interpretations of the focus group participant discourse. The qualitative data were then analyzed by inductive manual coding using a qualitative content analysis approach.Results: Five themes capturing the core components for successful person-centered ACP were extracted from the ideas voiced by participants: Placing highest value on patient autonomy and human life; uncovering patient’s true feelings and desires; sharing collected information on patients’ end-of-life wishes with other team members; relaying patients’ wishes to the physician; and handling conflicts among patients, relatives, and healthcare professionals.Conclusion: The results provide guidelines for the future development of novel, value-based, person-centered ACP practice for multidisciplinary healthcare professionals.
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Purpose: We held workshops (WSs) that recommend the use of advance care planning (ACP) for medical and health care professionals, and clarified whether or not these WSs motivated them to engage in their own ACP using two indicators: the proportion of professionals who wanted to conduct ACP and changes in the Death Attitude Inventory (DAI). Method: After the WS, we divided participants into two groups, depending on whether or not they wanted to have end-of-life discussions with their family and loved ones. The changes in the DAI brought about by the WSs and their impressions of the WS were compared between the groups. Results: A total of 91 participants were analyzed, of which 42 (46.2%) wanted to have end-of-life discussions with their family and loved ones. In both groups, “afterlife view” and “death anxiety and fear” in the DAI were significantly reduced after the WS when compared to attitudes from before the WS. In the group which wanted to have end-of-life discussions, “death avoidance” (effect size −0.42) and “sense of purpose in life” (effect size 0.51) changed significantly and positively. Conclusion: About half of the participants wanted to perform ACP after having attended the WSs, apparently due to an increased sense of purpose in life and a reduced death avoidance.
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Background: Although practicing advanced care planning (ACP) has recently been recommended, little is known about physicians’ practice of ACP, and barriers to ACP in Japan. We aimed to clarify the proportion of physicians practicing ACP and explore barriers to ACP. Methods: We conducted a cross-sectional survey among physicians at a tertiary hospital (934 beds) in 2019, and asked them about their practice and awareness of ACP as well as beliefs regarding end-of-life discussions. A multivariate logistic regression analysis was conducted to explore barriers to their practice of ACP. Results: In total, 90 of 186 physicians responded (response rate, 48%). Forty-two (46%; 95% confidence interval=37-57%) reported that they practiced ACP. In multivariate analysis, determinants of “not” practicing ACP included the lack of awareness of ACP and physicians’ greater beliefs regarding the lack of resources as well as the lack of time and perception of burden. Conclusion: Even at the tertiary hospital, only less than a half of physicians practiced ACP, and the lack of their awareness of ACP and various beliefs served as barriers to their practice. Initiatives to raise awareness of ACP and optimize the management to ensure sufficient time and resources for physicians may be promising to promote ACP.
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Background: In Chile there are 22,310 people in Chronic Hemodialysis (CHD), 53% of them older adults (OA). Shared decision-making and advance directives (AD) are especially important in OA with end-stage chronic renal failure, since they have greater levels of disability, morbidity and mortality, raising doubts about the benefit of therapy. Aims: To understand the experience in decision making and explore ways to express AD, in OA in CHD. Material and Methods: A qualitative phenomenological study, performing 12 in-depth interviews to OA who had been at CHD for at least one year. Results: The analysis revealed four broad comprehensive categories, two related to participation in the decision to enter CHD, namely the experience of subjects as spectators and their lack of interest for decision support and two referred to the expression of AD, namely the difficulty in facing their own finitude and resistance to express AD. Conclusions: There is little participation of older adults in the decision about their admission to dialysis therapy, and once they enter the CHD program they are not prepared to discuss AD in general, nor an eventual suspension of dialysis in particular.