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1.
Rev. enferm. UERJ ; 28: e47321, jan.-dez. 2020.
Artigo em Inglês, Português | LILACS, BDENF - Enfermagem | ID: biblio-1116094

RESUMO

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


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


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


Assuntos
Humanos , Idoso , Idoso de 80 Anos ou mais , Atitude do Pessoal de Saúde , Cuidados Paliativos na Terminalidade da Vida/ética , Temas Bioéticos , Pessoalidade , Morte , Relações Profissional-Família/ética , Relações Profissional-Paciente/ética , Atitude Frente a Morte , Valor da Vida
2.
PLoS One ; 15(7): e0235694, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32645062

RESUMO

This study evaluated the communication experiences of critical care nurses while caring for patients in an intensive care unit setting. We have collected qualitative data from 16 critical care nurses working in the intensive care unit of a tertiary hospital in Seoul, Korea, through two focus-group discussions and four in-depth individual interviews. All interviews were recorded and transcribed verbatim, and data were analyzed using the Colaizzi's method. Three themes of nurses' communication experiences were identified: facing unexpected communication difficulties, learning through trial and error, and recognizing communication experiences as being essential for care. Nurses recognized that communication is essential for quality care. Our findings indicate that critical care nurses should continuously aim to improve their existing skills regarding communication with patients and their care givers and acquire new communication skills to aid patient care.


Assuntos
Unidades de Terapia Intensiva/ética , Relações Enfermeiro-Paciente/ética , Relações Profissional-Família/ética , Adulto , Comunicação , Enfermagem de Cuidados Críticos , Feminino , Humanos , Papel do Profissional de Enfermagem , Recursos Humanos de Enfermagem no Hospital , Pesquisa Qualitativa , República da Coreia , Seul
3.
Psychol Trauma ; 12(S1): S146-S147, 2020 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-32538660

RESUMO

The COVID-19 pandemic has changed the way doctors approach palliative and end-of-life care, which has undoubtedly affected the mental health of patients, families, and health care professionals. Given these circumstances, doctors working on the front line are vulnerable to moral injury and compassion fatigue. This is a reflection of 2 junior doctors experiencing firsthand demands of caring for patients during the outbreak. (PsycInfo Database Record (c) 2020 APA, all rights reserved).


Assuntos
Fadiga por Compaixão , Infecções por Coronavirus/terapia , Corpo Clínico Hospitalar , Cuidados Paliativos , Pandemias , Pneumonia Viral/terapia , Relações Profissional-Família , Trauma Psicológico , Assistência Terminal , Adulto , Fadiga por Compaixão/etiologia , Fadiga por Compaixão/psicologia , Inglaterra , Humanos , Corpo Clínico Hospitalar/ética , Corpo Clínico Hospitalar/psicologia , Princípios Morais , Cuidados Paliativos/ética , Cuidados Paliativos/psicologia , Relações Profissional-Família/ética , Trauma Psicológico/etiologia , Trauma Psicológico/psicologia , Assistência Terminal/ética , Assistência Terminal/psicologia
4.
Rev. bioét. derecho ; (48): 41-59, mar. 2020. tab
Artigo em Espanhol | IBECS | ID: ibc-192077

RESUMO

Desde su origen, la Medicina Intensiva y la Bioética han compartido un desarrollo común, reforzándose entre ambas. Los límites de la tecnología, el cambio en la relación clínica, el respeto a las preferencias de los pacientes, han generado distintos conflictos éticos entre profesionales, pacientes y familiares. El objetivo del presente artículo es analizar como los pacientes que ingresan en las unidades de cuidados intensivos pueden participar en la toma de decisiones sobre actuaciones presentes (consentimiento informado) o futuras (voluntades anticipadas) e identificar el papel tanto del profesional sanitario como de la familia durante todo el proceso


Since its origin, Intensive Medicine and Bioethics have shared a common development, reinforcing each other. The limits of technology, the change in the clinical relationship, and respect for patients' preferences have generated different ethical conflicts between professionals, patients and family members. The objective of this article is to analyze how patients admitted to intensive care units can participate in decision-making about present (informed consent) or future (advance directives) actions and to identify the role of both the health professional and the family during the whole process


Des del seu origen, la Medicina Intensiva i la Bioètica han compartit un desenvolupament comú, reforçant-se mútuament. Els límits de la tecnologia, el canvi en la relació clínica, el respecte a les preferències dels pacients, han generat diferents conflictes ètics entre professionals, pacients i familiars. L'objectiu del present article és analitzar com els pacients que ingressen en les unitats de vigilància intensiva poden participar en la presa de decisions sobre actuacions presents (consentiment informat) o futures (voluntats anticipades) i identificar el paper tant del professional sanitari com de la família durant tot el procés


Assuntos
Humanos , Consentimento Livre e Esclarecido/ética , Unidades de Terapia Intensiva , Diretivas Antecipadas/ética , Tomada de Decisões/ética , Consentimento Livre e Esclarecido/legislação & jurisprudência , Diretivas Antecipadas/legislação & jurisprudência , Relações Profissional-Família/ética , Bioética
6.
Support Care Cancer ; 28(9): 4467-4476, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31927756

RESUMO

PURPOSE: Following their child's cancer diagnosis, parents must rapidly familiarize themselves with cancer-specific information and the health-care setting. Theory-driven research is needed to understand and address parents' difficulties when interacting with health-care professionals (HCPs). We examined parents' health-care experiences during and after the child's cancer treatment. METHODS: We recruited parents of children/adolescents (aged < 18 years) who had recently completed cancer treatment with curative intent from eight Australian hospitals. We conducted in-depth interviews using the psychosocial adjustment to illness scale while recruiting for the "CASCADE" survivorship intervention. We used grounded theory to explore parents' health-care experiences. RESULTS: Fifty-two mothers and six fathers of survivors (mean age at diagnosis = 5.1 years, time since treatment = 1.9 years) participated. Parents' experiences were characterized by (1) positive and negative interactions, (2) attitudes towards health care and HCPs, (3) trust and mistrust in the doctor-parent relationship, and (4) parents' engagement in care. Parents built trust with HCPs, who seemed approachable and personable. Although parents' experience was overall very positive, nearly half of parents reported negative interactions and mistrust. Parents rationalized negative experiences as caused by constraints in the health-care setting. Most parents felt support ended prematurely. We propose a new model accounting for these experiences and identifying potential underlying mechanisms. CONCLUSIONS: Depending on their degree of trust, parents followed recommendations more closely (high trust) or focused on being advocates for their child (low trust). Parents minimized the impact of negative HCP interactions through internal, rationalizing processes. Our findings demonstrate parents' flexibility in acting as a dynamic buffer between HCP-interactions and their child.


Assuntos
Neoplasias/psicologia , Relações Profissional-Família/ética , Adulto , Pré-Escolar , Comunicação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Adulto Jovem
7.
Rev. Rol enferm ; 43(1,supl): 272-281, ene. 2020. tab, graf
Artigo em Português | IBECS | ID: ibc-193319

RESUMO

Introduction: Identifying the ethical problems experienced in Primary Health Care leads us to the importance of reflection on them being essential for a humanizing care culture. Aim: To describe the main ethical problems in the daily life of health professionals in Primary Health Care. Methods: Integrative Literature Review, conducted between October / December 2016. The following databases were used: Medline, Scielo, UCP Institutional Repository and RCAAP. Inclusion criteria were: primary studies that met the study objectives and studies under 10 years. We found 200 studies. 97 were excluded for not meeting the study objectives, 24 because they were not from primary sources, 45 because they were not fully presented, and 34 because they were older than 10 years. They incorporated the integrative review 5 articles. Results and Discussion: It was noticed that the main ethical problems identified can be distributed in 3 groups: ethical problems in relations with users and families; ethical problems in team relations and ethical problems in health system relations. It has been noted that as the number of years of experience increases, ethical problems become more supported and sustained. It was found that there are differences in the identification of ethical problems between nurses and doctors working in Primary Health Care. Conclusions: All studies present ethical issues in relationships with clients and family members; interprofessional relations and relations with the health system. In addition, it was found that ethical problems are influenced by length of service and profession


No disponible


Assuntos
Humanos , Atenção Primária à Saúde/ética , Temas Bioéticos , Competência Profissional , Relações Profissional-Família/ética , Relações Profissional-Paciente/ética
9.
Rev. Pesqui. (Univ. Fed. Estado Rio J., Online) ; 12: 189-195, jan.-dez. 2020. ilus
Artigo em Inglês, Português | LILACS, BDENF - Enfermagem | ID: biblio-1047755

RESUMO

Objetivo: discutir sobre a reação familiar frente ao processo de comunicação de morte encefálica e a possível doação de órgãos. Método: revisão integrativa da literatura, com busca dos artigos nas bases de dados: SciELO, BEDENF, LILACS, MEDLINE publicados entre os anos de 2008 a 2017. Selecionou-se para essa pesquisa, 14 publicações conforme os critérios de inclusão e exclusão. Resultados: o elemento principal para que o processo de doação seja satisfatório é a família. E que estes apresentam reações diversas ao receber a informação de morte encefálica e a possível doação de órgão. Dentre esses vários fatores estão a local onde a comunicação é realizada e o desconhecimento dos familiares sobre a opinião do doador. Conclusão: ao receberem o diagnóstico de morte encefálica, os familiares apresentam manifestações como tristeza, choro e revolta. O desconhecimento esse assunto, leva os familiares a uma série de questionamentos e uma possível recusa na doação


Objective: discuss about the family reaction in front of the communication process of brain death and possible organ donation. Method: integrative review of literature, with search of articles in databases: SciELO, BEDENF, LILACS, MEDLINE published between the years of 2008 to 2017. We selected for this research, 14 publications according to the criteria of inclusion and exclusion. Results: the main element for which the donation process is satisfactory is the family. And they have different reactions to receive the information of brain death and organ donation possible. Among these various factors are the place where the communication is performed and the lack of family about the opinion of the donor. Conclusion: to receive the diagnosis of brain death, the rooms feature manifestations such as sadness, crying and revolt. The lack of this subject, brings the family to a series of questions and a possible refusal in the donation


Objetivo: discutir acerca de la reacción de la familia frente al proceso de comunicación de muerte cerebral y posible la donación de órganos. Método: revisión de la literatura integradora, con búsqueda de artículos en bases de datos: BEDENF, SciELO, LILACS, MEDLINE, publicados entre los años de 2008 a 2017. Hemos seleccionado para esta investigación, 14 publicaçoes según los criterios de inclusión y exclusión. Resultados: el principal elemento para que el proceso de donación es satisfactoria es la familia. Y tienen diferentes reacciones para recibir la información de la muerte cerebral y la donación de órganos es posible. Entre estos diversos factores son el lugar donde se realiza la comunicación y de la falta de familia acerca de la opinión de los donantes. Conclusión: para recibir el diagnóstico de muerte cerebral, las habitaciones cuentan con manifestaciones como la tristeza, el llanto y la revuelta. La falta de este tema, trae a la familia a una serie de preguntas y un posible rechazo de la donación


Assuntos
Humanos , Masculino , Feminino , Relações Profissional-Família/ética , Obtenção de Tecidos e Órgãos , Morte Encefálica , Família/psicologia
11.
J Clin Ethics ; 30(4): 347-355, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31851626

RESUMO

Most professional guidelines advocate family presence during resuscitation (FPDR). Many clinicians, however, are still reluctant to implement this recommendation. In this article I present the most comprehensive case for FPDR to date. I review the little that has been written about the ethics of FPDR, as well as the available empirical evidence. More importantly, I present and defend three arguments for FPDR: adherence to professional guidelines, benefit to patients and relatives, and patients' autonomy. I conclude with suggestions for future research.


Assuntos
Reanimação Cardiopulmonar/ética , Cuidados Críticos/ética , Família , Relações Profissional-Família/ética , Atitude do Pessoal de Saúde , Reanimação Cardiopulmonar/psicologia , Cuidados Críticos/psicologia , Família/psicologia , Humanos , Guias de Prática Clínica como Assunto
12.
J Clin Ethics ; 30(4): 376-383, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31851628

RESUMO

An Asian Indian Hindu family chose no intervention and hospice care for their newborn with hypoplastic right heart syndrome as an ethical option, and the newborn expired after five days. Professional nursing integrates values-based practice and evidence-based care with cultural humility when providing culturally responsive family-centered culture care. Each person's worldview is unique as influenced by culture, language, and religion, among other factors. The Nursing Team sought to understand this family's collective Indian Hindu worldview and end-of-life beliefs, values, and practices, in view of the unique aspects of the situation while the team integrated evidence-based strategies to provide family-centered culture care. Parental care choices conflicted with those of the Nursing Team, and some nurses experienced moral distress and cultural dissonance when negotiating their deeply held cultural and religious views to advocate for the family. The inability to reconcile and integrate a stressful or traumatic experience impacts nurses' well-being and contributes to compassion fatigue. Nurses need to be intentional in accessing interventions that promote coping and healing and moral resilience. Reflection and cultural humility, assessment, and knowledge in context, increase evidence-based culture care and positive outcomes. U.S. society's views on ethical behavior continue to evolve, and some may argue that the law should place more limits on parents' right to choose or to refuse treatment for their infants and children. Moral distress can lead to moral resilience and satisfaction of compassion when nurses provide family-centered culture care with cultural responsiveness and integrate values-based practice with evidence-based care, and aim to first do no harm.


Assuntos
Enfermagem Familiar/ética , Princípios Morais , Recursos Humanos de Enfermagem no Hospital/psicologia , Relações Profissional-Família/ética , Religião , Estresse Psicológico , Recusa do Paciente ao Tratamento/ética , Atitude Frente a Morte/etnologia , Criança , Cultura , Empatia , Hinduísmo , Humanos , Lactente , Recém-Nascido
14.
Gac Med Mex ; 155(5): 563-564, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31695240

RESUMO

Conflicts of interest are situations in which judgment and integrity of medical decisions or actions are influenced by a secondary interest, often of an economic nature. The Committee of Ethics and Transparency in the Physician-Industry Relationship of the National Academy of Medicine of Mexico recognizes that these conflicts occur in health professionals' daily life, but also in public and private institutions that provide health services, as well as in the academy and in research activities. Therefore, it is necessary to identify conflicting situations and always act in accordance with the patient's interest.


Assuntos
Códigos de Ética , Conflito de Interesses , Comissão de Ética , Ética Médica , Indústria Farmacêutica/ética , Humanos , Seguradoras/ética , Relações Médico-Paciente/ética , Relações Profissional-Família/ética
15.
Cardiol Young ; 29(11): 1361-1367, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31514764

RESUMO

INTRODUCTION: The way risk is interpreted by parents of children undergoing congenital cardiac surgery is poorly documented. Literature suggests clinicians have concerns that parents may not understand the complexity of procedures. Conversely, some parents perceive an unnecessary over-emphasis of risks. AIM: To explore how risk is encountered by parents of children who are undergoing cardiac surgery, in order to deliver effective and compassionate care. METHODS: A qualitative approach was adopted. Interviews were undertaken with 18 parents (mothers n = 10; fathers n = 8). Recordings were transcribed verbatim and analysed using a constant comparative-based approach. FINDINGS: Three themes emerged from the data: the nature of risk, reflecting the complexity of parental perception of risk and the influence of the doctor-parent relationship; presenting risk, highlighting the way in which risk is presented to and interpreted by parents; and risk and responsibility, examining the way in which parents engaged with risk and the impact of this on their relationship. CONCLUSIONS: The way in which risk is perceived by parents is complex and multi-factorial. The doctor-parent relationship is key to parental engagement. However, parents manage risk and uncertainty through a number of mechanisms, including those perceived as being not rational. This can cause tension, particularly when required to engage in informed decision-making.


Assuntos
Procedimentos Cirúrgicos Cardíacos/psicologia , Cardiopatias Congênitas/cirurgia , Pais/psicologia , Percepção/fisiologia , Médicos/psicologia , Relações Profissional-Família/ética , Pesquisa Qualitativa , Tomada de Decisões , Cardiopatias Congênitas/psicologia , Humanos
16.
Arch Pediatr ; 26(6): 330-336, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31353145

RESUMO

Nearly 20 years ago the EURONIC study reported that French neonatologists sometimes deemed it legitimate to terminate the lives of newborn infants when the prognosis appeared extremely poor. Parents were not always informed of these decisions. Major change has occurred since then and is described herein. MATERIAL AND METHODS: A survey was conducted in the Île-de-France region, from 1 January to 31 January 2016. Professionals from 15 neonatal intensive care units (NICUs) were invited to complete a questionnaire. RESULTS: A total of 702 questionnaires were collected and 670 responses were analyzed. Knowledge of the law differed according to professional status, with 71% of MDs (medical staff, MS), compared with 28% of nonmedical staff (NMS) declaring that they had good knowledge of the law. Most MDs and NMS believed that withholding or withdrawing life-sustaining treatments (WWLST) could be decided and implemented after a delay. Half of them thought that WWLST would always result in death. Although required by law, a consulting MD attended the collegial meeting required before deciding on WWLST in only half of the cases. Parents were almost always informed of the decision thereafter by the physician in charge of their infant. The most frequent disagreement with parents was observed when WWLST was the option selected. In this case, most professionals suggested postponing WWLST, continuing intensive care and dialogue with parents, aiming at a final shared decision. Major differences were observed between NICUs with regard to the withdrawal of artificial nutrition and hydration. Finally, 14% of MDs declared that infant active terminations of life still occurred in their NICU. Major differences concern WWLST and active termination of life, whose meaning has been partly modified since 2001. CONCLUSION: Several major changes were observed in this survey: (1) treatment withdrawal decisions are made today in agreement with the law; (2) parents' information and involvement in the decision process have profoundly changed; (3) active termination of life (euthanasia) very rarely occurs; only at the end of a process in accordance with ethical principles and within the law is this decision made.


Assuntos
Tomada de Decisão Clínica , Terapia Intensiva Neonatal/tendências , Consentimento dos Pais , Padrões de Prática Médica/tendências , Relações Profissional-Família , Assistência Terminal/tendências , Suspensão de Tratamento/tendências , Atitude do Pessoal de Saúde , Competência Clínica/estatística & dados numéricos , Tomada de Decisão Clínica/ética , Tomada de Decisão Clínica/métodos , França , Pesquisas sobre Serviços de Saúde , Humanos , Recém-Nascido , Terapia Intensiva Neonatal/ética , Terapia Intensiva Neonatal/legislação & jurisprudência , Terapia Intensiva Neonatal/métodos , Consentimento dos Pais/ética , Consentimento dos Pais/legislação & jurisprudência , Consentimento dos Pais/estatística & dados numéricos , Padrões de Prática Médica/ética , Padrões de Prática Médica/legislação & jurisprudência , Relações Profissional-Família/ética , Assistência Terminal/ética , Assistência Terminal/legislação & jurisprudência , Assistência Terminal/métodos , Suspensão de Tratamento/ética , Suspensão de Tratamento/legislação & jurisprudência
17.
Arch Pediatr ; 26(6): 352-357, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31353146

RESUMO

INTRODUCTION: Announcing the diagnosis allows the therapeutic alliance between physicians and patients to be sealed and it prevents abandonment of treatment. To compensate for the deficit in information received by the families, the Franco-African Group of Pediatric Oncology (FAGPO) has published an "African Pediatric Cancer Announcement Guide" for the group's pediatric oncology units. OBJECTIVE: To analyze the announcements made to parents and children 2 years after the provision of this guide. METHODS: Cross-sectional survey conducted from March to July 2016. In total, 69 parents of children followed up in the pediatric oncology unit of Abidjan were interviewed regarding the characteristics of the announcement that was made to them and the information given to the sick child. RESULTS: Of all the accompanying individuals, 91% reported having benefited from the announcement made with empathy, mainly by a physician. In approximately one quarter of the cases the information had been given to a third party. The main barriers to information were: the negative experiences of parents, the medical terminology, and communication problems. The sick child was rarely informed. DISCUSSION: The information given was in accordance, in content and form, with the data from Western and African literature. The lack of information given to the child has a dual explanation: the primacy of the community over the individual advocated by African culture and the non-integration of the rights of children in the current code of ethics. CONCLUSION: The information provided could be improved by practical training of physicians in the technique of breaking bad news to patients and their families and the use of a code of ethics in accordance with the principle of autonomy.


Assuntos
Fidelidade a Diretrizes/estatística & dados numéricos , Neoplasias/diagnóstico , Relações Médico-Paciente , Padrões de Prática Médica/estatística & dados numéricos , Relações Profissional-Família , Revelação da Verdade , Adolescente , Adulto , Criança , Pré-Escolar , Costa do Marfim , Estudos Transversais , Feminino , Fidelidade a Diretrizes/ética , Pesquisas sobre Serviços de Saúde , Humanos , Lactente , Recém-Nascido , Masculino , Oncologia/ética , Oncologia/normas , Pessoa de Meia-Idade , Pediatria/ética , Pediatria/normas , Relações Médico-Paciente/ética , Guias de Prática Clínica como Assunto , Padrões de Prática Médica/ética , Padrões de Prática Médica/normas , Relações Profissional-Família/ética , Revelação da Verdade/ética
18.
Clin Interv Aging ; 14: 997-1005, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31213786

RESUMO

Purpose: Advance care planning (ACP) performed by regular staff, which also includes patients with cognitive impairment and their next of kin, is scarcely studied. Thus, we planned an implementation study including key stakeholders (patients, next of kin, and health care personnel) using a whole-ward/system approach to ACP. We explored how they experienced ACP and its significance. Patients and methods: This qualitative study is part of a mixed-method implementation study of ACP. In four nursing homes, we did qualitative interviews and audio-recordings of meetings. We completed 20 individual semistructured interviews with participants soon after ACP conversations. The interviews included patients with cognitive impairment, their next of kin, and health care personnel. We also conducted four focus group interviews with staff and managers in the nursing homes and audio-recorded four network meetings with the project teams implementing ACP. Results: All participants appreciated taking part in ACP. Patients and next of kin focused more on the past and present than future treatment preferences. Still, ACP seemed to contribute to a stronger patient focus on end-of-life conversations. More generally, ACP seemed to contribute to valuable information for future decision-making, trusting relations, improved end-of-life communication, and saving time and resources. Conclusion: Safeguarding a strong patient focus on ACP and fostering a person-centered care culture in nursing home wards seem to be achievable through implementation of ACP that includes regular staff, patients with cognitive impairment, and their next of kin.


Assuntos
Planejamento Antecipado de Cuidados , Disfunção Cognitiva , Instituição de Longa Permanência para Idosos/organização & administração , Casas de Saúde/organização & administração , Assistência Centrada no Paciente , Adulto , Idoso , Atitude do Pessoal de Saúde , Cuidadores/psicologia , Disfunção Cognitiva/diagnóstico , Disfunção Cognitiva/psicologia , Tomada de Decisões/ética , Feminino , Grupos Focais , Humanos , Masculino , Assistência Centrada no Paciente/ética , Assistência Centrada no Paciente/métodos , Relações Profissional-Família/ética , Pesquisa Qualitativa
19.
Pediatrics ; 144(1)2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-31167936

RESUMO

We present the case of a girl aged 17 years and 10 months who has a strong family history of long QT syndrome and genetic testing confirming the diagnosis of long QT syndrome in the patient also. She was initially medically treated with ß-blocker therapy; however, after suffering 1 episode of syncope during exertion, she underwent placement of an implantable cardioverter defibrillator. Since then, she has never had syncope. However, during the few months before this presentation, she experienced shocks on multiple occasions without any underlying arrhythmias. These shocks are disconcerting for her, and she is having significant anxiety about them. She requests the defibrillator to be inactivated. However, her mother, who also shares the diagnosis of long QT syndrome, disagrees and wants the defibrillator to remain active. The ethics team is consulted in this setting of disagreement between an adolescent, who is 2 months shy of the age of maturity and medical decision-making, and her mother, who is currently responsible for her medical decisions. The question for the consultation is whether it would be ethically permissible for the doctors to comply with the patient's request to turn off the defibrillator or whether the doctors should follow the mother's wishes until the patient is 18 years of age.


Assuntos
Desfibriladores Implantáveis/ética , Consentimento Informado por Menores/ética , Síndrome do QT Longo/terapia , Consentimento dos Pais/ética , Participação do Paciente , Adolescente , Fatores Etários , Desfibriladores Implantáveis/efeitos adversos , Desfibriladores Implantáveis/psicologia , Feminino , Humanos , Consentimento Informado por Menores/psicologia , Síndrome do QT Longo/diagnóstico , Síndrome do QT Longo/psicologia , Relações Mãe-Filho/psicologia , Consentimento dos Pais/psicologia , Participação do Paciente/psicologia , Relações Médico-Paciente/ética , Relações Profissional-Família/ética
20.
Arch Dis Child ; 104(9): 837-843, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31079074

RESUMO

OBJECTIVE: A proportion of children die, making them potentially eligible to be organ/tissue donors. Not all are approached for donation, and experiences of those parents are not well understood. The objective was to investigate to what extent organ and tissue donation (OTD) is discussed as part of end-of-life care and to explore parents' and healthcare professionals' (HCPs) experiences. DESIGN: A retrospective qualitative study. SETTING: Multicentre study with participants recruited through two neonatal intensive care units (ICUs), two paediatric ICUs, a cardiac ICU and a children's hospice. PATIENTS: Bereaved parents, parents of a child with a long-term condition (LTC) and HCPs. INTERVENTIONS: None. MAIN OUTCOMES AND MEASURES: Parents' and HCPs' views and experiences of discussions about OTD. RESULTS: 24 parents of 20 children were interviewed: 21 bereaved parents and 3 parents of a child with a LTC. Seven parents were asked about donation (13 not asked), four agreed and two donated. 41 HCPs were interviewed. Themes: complexity of donation process, OTD as a coping strategy, the importance of asking, difficulty of raising the topic,\ and parents' assumptions about health of organs (when donation is not discussed). CONCLUSIONS: The findings add new knowledge about parents' assumptions about the value of their child's organs when discussions about OTD are not raised, and that HCPs do not routinely ask, are sometimes hesitant to ask in fear of damaging relationships, and the reality of the complexity of the donation process. Given the current levels of awareness around OTD, the topic should be raised.


Assuntos
Futilidade Médica/psicologia , Transplante de Órgãos/psicologia , Pais/psicologia , Relações Profissional-Família/ética , Assistência Terminal/psicologia , Obtenção de Tecidos e Órgãos/ética , Adolescente , Criança , Pré-Escolar , Tomada de Decisões , Feminino , Pesar , Guias como Assunto , Humanos , Lactente , Masculino , Futilidade Médica/ética , Transplante de Órgãos/ética , Pais/educação , Pesquisa Qualitativa , Estudos Retrospectivos , Assistência Terminal/ética
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