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1.
Narrat Inq Bioeth ; 13(2): 129-137, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38661968

RESUMO

Comatose survivors of cardiac arrest may die following withdrawal of life-sustaining therapy (WLST) due to poor neurologic prognosis. Family members, acting as surrogate decision makers, are frequently asked to decide whether the patient should continue to receive ongoing life-sustaining therapy such as mechanical ventilation in this context of risk of death following removal. Sometimes, physicians and family members disagree about what is in the patient's best interest, and this conflict causes distress for both families and medical personnel.This article examines themes recorded in the medical records of 24 cardiac arrest patients at Columbia University Medical Center (CUMC) whose families chose to pursue continued life support despite physician recommendations for withdrawal. In documented conversations between patients' families and their providers, the most prominent themes included faith in miracles, the inappropriateness of "playing God," the value of more time with the patient, and differences in how providers and family members perceived the patient's status.


Assuntos
Família , Parada Cardíaca , Médicos , Relações Profissional-Família , Pesquisa Qualitativa , Suspensão de Tratamento , Humanos , Parada Cardíaca/terapia , Feminino , Masculino , Suspensão de Tratamento/ética , Pessoa de Meia-Idade , Tomada de Decisões , Adulto , Idoso , Cuidados para Prolongar a Vida/ética , Conflito Familiar
2.
Ital J Pediatr ; 47(1): 153, 2021 Jul 07.
Artigo em Inglês | MEDLINE | ID: mdl-34233717

RESUMO

OBJECTIVES: To investigate how life-sustaining treatment (LST) decisions are made and identify problematic ethical concerns confronted by physicians and nurses in pediatric intensive care within Italy. METHODS: An 88-question online survey was created, based on a previous qualitative study conducted by this team. The survey was designed to identify how LST decisions were managed; contrasting actual practices with what participants think practices should be. Replies from physicians and nurses were compared, to identify potential inter-professional ethical tensions. The study also identified participants' principal ethical concerns. Moreover, open-ended questions elicited qualitative perspectives on participants' views. The survey was pilot-tested and refined before initiation of the study. RESULTS: 31 physicians and 65 nurses participated in the study. Participants were recruited from pediatric intensive care units across five Italian cities; i.e., Florence, Milan, Padua, Rome, Verona. Statistically significant differences were identified for (a) virtually all questions contrasting actual practices with what participants think practices should be and (b) 14 questions contrasting physician replies with those of nurses. Physicians and nurses identified the absence of legislative standards for LST withdrawal as a highly problematic ethical concern. Physicians also identified bearing responsibility for LST decisions as a major concern. Qualitative descriptions further demonstrated that these Italian pediatric intensive care clinicians encounter significantly distressing ethical problems in their practice. CONCLUSIONS: The results of this study highlight a need for the development of (a) strategies for improving team processes regarding LST decisions, so they can be better aligned with how clinicians think decisions should be made, and (b) Italian LST decision-making standards that can help ensure optimal ethical practices.


Assuntos
Tomada de Decisão Clínica/ética , Ética Médica , Ética em Enfermagem , Unidades de Terapia Intensiva Pediátrica , Cuidados para Prolongar a Vida/ética , Atitude do Pessoal de Saúde , Criança , Feminino , Humanos , Itália , Masculino , Inquéritos e Questionários , Suspensão de Tratamento/ética
3.
Rev. esp. med. legal ; 46(3): 119-126, jul.-sept. 2020.
Artigo em Espanhol | IBECS | ID: ibc-192313

RESUMO

La pandemia por COVID-19 ha suscitado problemas éticos y médico-legales, entre los que destaca la asignación equitativa de recursos sanitarios, sobre todo en relación a la priorización de pacientes y el racionamiento de recursos. El establecimiento de prioridades está siempre presente en los sistemas sanitarios y depende de la teoría de justicia aplicable en cada sociedad. El racionamiento de recursos ha sido necesario en la pandemia por COVID-19, por lo que se han publicado documentos de consenso para la toma de decisiones sustentadas en cuatro valores éticos fundamentales: maximización de los beneficios, tratar a las personas igualmente, contribuir en la creación de valor social y dar prioridad a la situación más grave. De ellos derivan recomendaciones específicas: maximizar beneficios; priorizar a los trabajadores de la salud; no priorizar la asistencia por orden de llegada; ser sensible a la evidencia científica; reconocer la participación en la investigación y aplicar los mismos principios a los pacientes COVID-19 que a los no-COVID-19


The COVID-19 pandemic has raised ethical and medico-legal problems, which include the equitable allocation of health resources, especially in relation to the prioritization of patients and the rationing of resources. Priority setting is always present in healthcare systems and depends on the theory of justice applicable in each society. Resource rationing has been necessary in the COVID-19 pandemic, and therefore consensus documents have been published for decision-making based on four fundamental ethical values: maximization of benefits, treating people equally, contributing to creating social value and giving priority to the worst off, from which specific recommendations derive: maximize benefits; prioritize health workers; do not prioritize attendance on a first-come, first-served basis; be sensitive to scientific evidence; recognize participation in research and apply the same principles to COVID-19 patients as to non-COVID-19 patients


Assuntos
Humanos , Valor da Vida , Administração dos Cuidados ao Paciente/legislação & jurisprudência , Seleção de Pacientes/ética , Infecções por Coronavirus , Cuidados Paliativos na Terminalidade da Vida/ética , Cuidados para Prolongar a Vida/ética , Pandemias/legislação & jurisprudência , Tomada de Decisões/ética , Temas Bioéticos , Revisão da Utilização de Recursos de Saúde/legislação & jurisprudência , Alocação de Recursos/legislação & jurisprudência , Recusa do Médico a Tratar/ética , Recusa do Médico a Tratar/legislação & jurisprudência
4.
Bioethics ; 34(7): 687-694, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32562283

RESUMO

In 2017 and 2018, the English courts were asked to decide whether continued life-sustaining treatment was in the best interests of three infants: Charlie Gard, Alfie Evans and Isaiah Haastrup. Each infant had sustained catastrophic, irrecoverable brain damage. Dignity played an important role in the best interests assessments reached by the Family division of the High Court in each case. Multiple conceptions of dignity circulate, with potentially conflicting implications for infants such as Charlie, Alfie and Isaiah. The judgements do not explicate the conceptions of dignity upon which they rely. This article reconstructs the conceptions of dignity invoked in these judgements, finding that a broadly Kantian, agential conception dominates, under which human dignity requires the prospect of agency. This conception is situated within the broader body of thought on dignity, and the potentially adverse implications of applying the reconstructed conception in best interests assessments for infants with severely restricted consciousness are discussed.


Assuntos
Análise Ética , Cuidados para Prolongar a Vida/ética , Cuidados para Prolongar a Vida/legislação & jurisprudência , Status Moral , Respeito , Suspensão de Tratamento/ética , Suspensão de Tratamento/legislação & jurisprudência , Inglaterra , Humanos , Lactente , Jurisprudência , Masculino , Futilidade Médica/ética , Futilidade Médica/legislação & jurisprudência
5.
J Clin Ethics ; 31(2): 111-125, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32585654

RESUMO

INTRODUCTION: In highly developed countries, as many as 16 percent of children are physically abused each year. Traumatic brain injury (TBI) is the most common injury in non-accidental trauma (NAT) and is responsible for 80 percent of fatal NAT cases, with most deaths occurring in children younger than three years old. Cases of abusers who refuse withdrawal of life-sustaining medical treatment (LSMT) to avoid criminal charges have previously been reported. Therefore, we hypothesized that NAT is associated with a lower risk for withdrawal LSMT in pediatric TBI. METHODS: The pediatric Trauma Quality Improvement Program database was analyzed (2014 to 2016) for patients aged 16 and younger with TBI and Glasgow Coma Scale (GCS) of 8 and lower on admission. Patients with a head Abbreviated Injury Scale (AIS) of 2 or less or who died within 48 hours were excluded. A multivariable logistic regression model was used for analysis. RESULTS: Of 2,209 TBI patients, 92 (4.2 percent) had withdrawal of LSMT. Compared to those without withdrawal of LMST, those with LMST had statistically similar median age (three years of age versus seven years) and a higher rate of NAT (33.7 percent versus 13.5 percent). The most common specified perpetrator was a father/stepfather/male partner (70 percent). After adjusting for covariates, factors associated with higher risk for withdrawal of LSMT included age of less than three years (OR 2.38, CI 1.34-4.23) and NAT (OR 1.86, CI 1.02-3.41). CONCLUSION: NAT is associated with increased risk for withdrawal of LSMT in pediatric TBI. Age of less than three years is similarly associated with a higher risk for withdrawal of LSMT. Future research in this population is needed to determine what other factors predict withdrawal of LSMT and what resources, such as social workers and/or ethics consults, are utilized.


Assuntos
Lesões Encefálicas Traumáticas , Lesões Encefálicas , Cuidados para Prolongar a Vida , Suspensão de Tratamento , Adolescente , Criança , Pré-Escolar , Escala de Coma de Glasgow , Humanos , Cuidados para Prolongar a Vida/ética , Masculino , Estudos Retrospectivos , Suspensão de Tratamento/ética
8.
New Bioeth ; 26(3): 238-252, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-32449486

RESUMO

This paper examines the Court of Protection decision in Briggs v Briggs. It considers whether the approach of the Court, which gave effective decisive weight to a patient's previously expressed wishes about whether he should be kept alive in a minimally conscious state, is a proper application of the 'best interests' test under the Mental Capacity Act 2005. It assesses whether the Briggs approach is effectively applying a 'substituted judgement' test and considers the difficulties in ascertaining what a person's actual wishes are.


Assuntos
Diretivas Antecipadas/ética , Eutanásia Passiva/ética , Legislação Médica/ética , Cuidados para Prolongar a Vida/ética , Competência Mental , Estado Vegetativo Persistente , Suspensão de Tratamento/ética , Diretivas Antecipadas/legislação & jurisprudência , Estado de Consciência/ética , Tomada de Decisões/ética , Ingestão de Líquidos , Ingestão de Alimentos , Inglaterra , Ética Médica , Eutanásia Passiva/legislação & jurisprudência , Humanos , Julgamento , Cuidados para Prolongar a Vida/legislação & jurisprudência , Princípios Morais , Ética Baseada em Princípios
9.
Crit Care Med ; 48(5): 645-653, 2020 05.
Artigo em Inglês | MEDLINE | ID: mdl-32310619

RESUMO

OBJECTIVES: To develop a consensus framework that can guide the process of decision-making on continuing or limiting life-sustaining treatments in ICU patients, using evidence-based items, supported by caregivers, patients, and surrogate decision makers from multiple countries. DESIGN: A three-round web-based international Delphi consensus study with a priori consensus definition was conducted with experts from 13 countries. Participants reviewed items of the decision-making process on a seven-point Likert scale or with open-ended questions. Questions concerned terminology, content, and timing of decision-making steps. The summarized results (including mean scores) and expert suggestions were presented in the subsequent round for review. SETTING: Web-based surveys of international participants representing ICU physicians, nurses, former ICU patients, and surrogate decision makers. PATIENTS: Not applicable. INTERVENTIONS: Not applicable. MEASUREMENTS AND MAIN RESULTS: In three rounds, respectively, 28, 28, and 27 (of 33 invited) physicians together with 12, 10, and seven (of 19 invited) nurses participated. Patients and surrogates were involved in round one and 12 of 27 responded. Caregivers were mostly working in university affiliated hospitals in Northern Europe. During the Delphi process, most items were modified in order to reach consensus. Seven items lacked consensus after three rounds. The final consensus framework comprises the content and timing of four elements; three elements focused on caregiver-surrogate communication (admission meeting, follow-up meeting, goals-of-care meeting); and one element (weekly time-out meeting) focused on assessing preferences, prognosis, and proportionality of ICU treatment among professionals. CONCLUSIONS: Physicians, nurses, patients, and surrogates generated a consensus-based framework to guide the process of decision-making on continuing or limiting life-sustaining treatments in the ICU. Early, frequent, and scheduled family meetings combined with a repeated multidisciplinary time-out meeting may support decisions in relation to patient preferences, prognosis, and proportionality.


Assuntos
Tomada de Decisão Clínica/métodos , Unidades de Terapia Intensiva/organização & administração , Cuidados para Prolongar a Vida/métodos , Suspensão de Tratamento/normas , Atitude do Pessoal de Saúde , Cuidadores/psicologia , Tomada de Decisão Clínica/ética , Comunicação , Técnicas de Apoio para a Decisão , Técnica Delfos , Prática Clínica Baseada em Evidências , Humanos , Unidades de Terapia Intensiva/ética , Unidades de Terapia Intensiva/normas , Tutores Legais/psicologia , Cuidados para Prolongar a Vida/ética , Cuidados para Prolongar a Vida/normas , Pacientes/psicologia , Prognóstico , Suspensão de Tratamento/ética
11.
Bioethics ; 34(6): 612-619, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-32124448

RESUMO

Prognosis after severe brain injury is highly uncertain, and decisions to withhold or withdraw life-sustaining treatment are often made prematurely. These decisions are often driven by a desire to avoid a situation where the patient becomes 'trapped' in a condition they would find unacceptable. However, this means that a proportion of patients who would have gone on to make a good recovery, are allowed to die. I propose a shift in practice towards the routine provision of aggressive care, even in cases where the probability of survival and acceptable recovery is thought to be low. In conjunction with this shift, I argue in favour of a presumption towards withdrawing life-sustaining treatment, including artificial nutrition and hydration, when it becomes clear that a patient will not recover to a level that would be acceptable to them. I then respond to three potential objections to this proposal.


Assuntos
Lesões Encefálicas/diagnóstico , Tomada de Decisões , Cuidados para Prolongar a Vida/ética , Suspensão de Tratamento/ética , Humanos , Prognóstico , Incerteza
12.
Rev. bioét. derecho ; (48): 5-21, mar. 2020.
Artigo em Espanhol | IBECS | ID: ibc-192075

RESUMO

La medicina en general, y la medicina intensiva (SMI) en particular, han presentado grandes cambios a lo largo de los últimos años, en especial en relación a la toma de decisiones sobre las actuaciones a realizar en pacientes efectos de enfermedades crónicas. De esta manera, tanto la enfermedad oncológica como las enfermedades crónicas no oncológicas, en la mayoría de casos, tienen un curso evolutivo mucho más largo, con episodios de descompensación que pueden requerir la instauración de medicina intensiva. Es por ello que actualmente enfermedades que cursan con insuficiencia de un solo órgano, como pueden ser la cirrosis hepática o la miocardiopatía dilatada, por ejemplo, se pueden considerar terminales según su grado de evolución. Esto obliga a los equipos asistenciales a tener no solo conocimientos científico-técnicos sino también bioéticos, para decidir la correcta adecuación diagnóstico-terapéutica en cada caso concreto. En este trabajo se pretenden dar algunas nociones básicas para tomar decisiones clínicas en este grupo de pacientes


Medicine in general and the intensive medicine (ICM) in particular, have presented major changes in recent years, especially in relation to decision-making on the actions to be taken in patients with chronic diseases. Thus, both oncological and non-oncological chronic diseases, in most cases, have a much longer evolutionary course, with decompensation episodes that may require the establishment of intensive medicine. That is why currently diseases with a single organ failure, such as liver cirrhosis or dilated cardiomyopathy, for example, can be considered terminal according to their degree of evolution. This requires health care teams to have not only scientifictechnical knowledge but also bioethical knowledge in order to decide on the correct diagnostic-therapeutic approach in each specific case. In this work, we intend to give some basic notions to make clinical decisions in this group of patients


La medicina en general, I la medicina intensiva (SMI) en particular, han presentat grans canvis al llarg dels últims anys, especialment en relació a la presa de decisions sobre les actuacions que cal dur a terme en pacients afectats de malalties cròniques. Tant la malaltia oncològica com les malalties cròniques no oncològiques, en la majoria de casos, tenen un curs evolutiu molt més llarg, amb episodis de descompensació que poden requerir la instauració de medicina intensiva. És per això que actualment malalties que cursen amb insuficiència d'un sol òrgan, com pot ser la cirrosi hepàtica o la miocardiopatia dilatada, per exemple, es poden considerar terminals segons el seu grau d'evolució. Això obliga els equips assistencials a tenir no només coneixements cientificotècnics sinó també bioètics per decidir la correcta adequació diagnòstic-terapèutica en cada cas concret. En aquest treball es preté aportar algunes nocions bàsiques per a prende decisions clíniques en aquest grup de pacients


Assuntos
Humanos , Cuidados Paliativos na Terminalidade da Vida/ética , Unidades de Cuidados Coronarianos , Cuidados para Prolongar a Vida/ética , Hospitalização , Tomada de Decisões/ética , Doença Crônica , Demência
13.
Rev. bioét. derecho ; (48): 81-93, mar. 2020.
Artigo em Espanhol | IBECS | ID: ibc-192079

RESUMO

La misión de los cuidados intensivos es restaurar la situación basal de salud libre de discapacidad severa atendiendo al principio bioético de beneficencia, respetando la dignidad y voluntad del paciente de ser tratado lo que vendría a ser atender al principio bioético de autonomía, y realizando todo esto de una forma adecuada a la mejor evidencia actual, justa y sostenible atendiendo a los principios de no maleficencia y de justicia. Cuando no es posible es cuando los profesionales tienen la obligación ética de iniciar un diálogo de manera respetuosa y prudente con el  paciente y/o la familia y el resto de profesionales implicados (atención primaria, enfermería, especialistas...etc.) de cara a llegar a un consenso sobre limitar los tratamientos de soporte vital y/o adecuar  los cuidados y continuar el tratamiento con un plan terapéutico de cuidados dirigidos al confort, control de síntomas y a mejorar la calidad de vida (Plan de cuidados paliativos) para preservar la dignidad del paciente, evitar el sufrimiento y proporcionar un tratamiento compasivo de soporte y acompañamiento durante el proceso de muerte si se diera el mismo atendiendo al paciente y a la familia con el máximo cuidado y respeto en un marco de humanización de la salud. Atender de forma excelente el final de la vida significa dignificar a las personas que están pasando por ese proceso, aportar un valor extraordinario de humanidad y debe ser un objetivo prioritario actual en nuestro quehacer diario en las unidades de cuidados intensivos


The mission of intensive care is to restore the baseline health situation free of severe disability by following the bioethical principle of beneficence, respecting the dignity and willingness of the patient to be treated what would be to attend to the bioethical principle of autonomy, and doing all this in a manner appropriate to the best current, fair and sustainable evidence, taking into account the principles of non-maleficence and justice. When it is not possible, it is when professionals have the ethical obligation to initiate a dialogue in a respectful and prudent manner with the patient and / or the family and the rest of the professionals involved (primary care, nursing, specialists ... etc.) Face to reach a consensus on limiting life support treatments and / or adapt care and continue treatment with a therapeutic plan of care aimed at comfort, symptom control and improving the quality of life (Palliative Care Plan) to preserve the dignity of the patient, avoid suffering and provide a compassionate support and support during the death process if the same were given to the patient and the family with the utmost care and respect in a framework of humanization of health. Addressing the end of life in an excellent way means dignifying the people who are going through this process, providing an extraordinary value of humanity and must be a current priority in our daily work in the intensive care units


La finalitat de la vigilància intensiva és restaurar la situació basal de salut lliure de discapacitat severa atenent al principi bioètic de beneficència, respectant la dignitat I voluntat del pacient de ser tractat, cosa que vindria a ser atendre al principi bioètic d'autonomia, I realitzant tot això d'una forma adequada a la millor evidència actual, justa I sostenible, atesos els principis de no maleficència I de justícia. Quan tot això no és possible és quan els professionals tenen l'obligació ètica d'iniciar un diàleg de manera respectuosa I prudent amb el pacient i/o la família I amb la resta de professionals implicats (atenció primària, infermeria, especialistes...etc.) de cara a arribar a un consens sobre limitar els tractaments de suport vital i/o adequar les cures I continuar el tractament amb un pla terapèutic de cures dirigides al confort, el control de símptomes I a millorar la qualitat de vida (Pla de Cures Pal·liatives) per a preservar la dignitat del pacient, evitar el sofriment I proporcionar-li un tractament compassiu de suport I acompanyament durant el procés de mort, atenent el pacient I a la família amb la màxima cura I respecte en un marc d'humanització de la salut. Atendre de forma excel·lent el final de la vida significa dignificar les persones que están passant per aquest procés, aportar un valor extraordinari d'humnaitat I ha de ser un objectiu prioritari actual en el nostre qufer diari en les unitats de vigilancia intensiva


Assuntos
Humanos , Cuidados para Prolongar a Vida/ética , Cuidados Paliativos na Terminalidade da Vida/ética , Cuidados Paliativos na Terminalidade da Vida/legislação & jurisprudência , Tomada de Decisões/ética , Cuidados para Prolongar a Vida/classificação , Cuidados para Prolongar a Vida/métodos , Unidades de Terapia Intensiva
14.
Am J Hosp Palliat Care ; 37(7): 532-536, 2020 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-31916859

RESUMO

BACKGROUND: Advanced care planning through Physician Order For Life-Sustaining Therapies (POLST) has been encouraged by professional societies. But these documents may be overlooked or ignored during hospitalization and "full-code" orders written as a default, putting patients at risk for unwanted resuscitation. After 2 instances of unwanted resuscitation in which limited support POLSTs were ignored, a series of improvements were implemented. This study measured the effectiveness of those steps in reducing POLST code status discrepancy. METHODS: Pre-post implementation chart review of randomly chosen medical admissions to determine the rate of discordance between POLST orders (when present) and admission code status orders. Physician Order For Life-Sustaining Therapies were classified as either "full" or "limited" based on orders for life-sustaining therapies on the form. Chi-square tests or Fisher exact tests were performed on binary data to identify statistically significant differences at the 95% confidence level between pre- and postimplementation admissions. RESULTS: In all, 444 preimplementation and 448 postimplementation admissions were evaluated. Discrepant code status orders for those with limited POLST fell from 10 (22.7%) of 44 preimplementation to 3 (4.6%) of 65 after implementation, P = .006. The number of documented code status discussions in admission notes increased from 19.6% to 63.6% (P < .001). The median age of all POLST in the chart was 1.2 years. CONCLUSIONS: Among those patients with limited POLST orders, discrepant full-code orders increase the potential for unwanted resuscitation. Multistep improvements including documentation templates improved the process of verifying end-of-life wishes and increased meaningful code status discussions. The rate of discrepant orders fell in response to process improvements.


Assuntos
Diretivas Antecipadas/ética , Cuidados para Prolongar a Vida/ética , Melhoria de Qualidade/organização & administração , Ordens quanto à Conduta (Ética Médica)/ética , Adulto , Planejamento Antecipado de Cuidados/ética , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
15.
HEC Forum ; 32(1): 13-20, 2020 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-31535261

RESUMO

When should doctors seek protective custody to override a parent's refusal of potentially lifesaving treatment for their child? The answer to this question seemingly has different answers for different subspecialties of pediatrics. This paper specifically looks at different thresholds for physicians overriding parental refusals of life-sustaining treatment between neonatology, cardiology, and oncology. The threshold for mandating treatment of premature babies seems to be a survival rate of 25-50%. This is not the case when the treatment in question is open heart surgery for a child with congenital heart disease. Most cardiologists would not pursue legal action when parents refuse treatment, unless the anticipated survival rate after surgery is above 90%. In pediatric oncology, there are case reports of physicians requesting and obtaining protective custody for cancer treatment when the reported mortality rates are 40-50%. Such differences might be attributed to differences in care, a reasonable prioritization of quality of life over survival, or the role uncertainty plays on prognoses, especially for the extremely young. Nonetheless, other, non-medical factors may have a significant effect on inconsistencies in care across these pediatric subspecialties and require further examinations.


Assuntos
Cuidados para Prolongar a Vida/ética , Poder Familiar/psicologia , Suspensão de Tratamento/normas , Humanos , Recém-Nascido , Cuidados para Prolongar a Vida/métodos , Cuidados para Prolongar a Vida/psicologia , Neonatologia/ética , Neonatologia/legislação & jurisprudência , Relações Profissional-Paciente , Suspensão de Tratamento/ética , Suspensão de Tratamento/legislação & jurisprudência
16.
J Med Ethics ; 46(1): 7-15, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31615879

RESUMO

BACKGROUND: Decisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public attitudes towards treatment withdrawal and the role of parents in situations of disagreement have not previously been assessed. METHODS: An online survey was conducted with a sample of the UK public to assess public views about the benefit of life in hypothetical cases similar to real cases heard by the UK courts (eg, Charlie Gard, Alfie Evans). We then evaluated these public views in comparison with existing ethical frameworks for decision-making. RESULTS: One hundred and thirty participants completed the survey. The majority (94%) agreed that an infant's life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were positively associated with the importance of use of medical resources, the infant's ability to have emotional relationships, and mental abilities. Up to 50% of participants in each case believed it was permissible to either continue or withdraw treatment. CONCLUSION: Despite the controversy, our findings indicate that in the most severe cases, most people agree that life is not worth living for a profoundly disabled infant. Our survey found wide acceptance of at least the permissibility of withdrawal of treatment across a range of cases, though also a reluctance to overrule parents' decisions. These findings may be useful when constructing guidelines for clinical practice.


Assuntos
Atitude Frente a Saúde , Tomada de Decisões/ética , Crianças com Deficiência , Ética Médica , Eutanásia Passiva , Cuidados para Prolongar a Vida/ética , Opinião Pública , Criança , Desenvolvimento Infantil , Emoções , Análise Ética , Humanos , Lactente , Pais , Relações Médico-Paciente , Médicos , Alocação de Recursos , Índice de Gravidade de Doença , Inquéritos e Questionários , Reino Unido , Valor da Vida , Suspensão de Tratamento
17.
Ann Phys Rehabil Med ; 63(6): 483-487, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31682940

RESUMO

BACKGROUND: Locked-in syndrome (LIS) characterizes individuals who have experienced pontine lesions, who have limited motor output but with preserved cognitive abilities. Despite their severe physical impairment, individuals with LIS self-profess a higher quality of life than generally expected. Such third-person expectations about LIS are shaped by personal and cultural factors in western countries. OBJECTIVE: We sought to investigate whether such opinions are further influenced by the cultural background in East Asia. We surveyed attitudes about the ethics of life-sustaining treatment in LIS in a cohort of medical and non-medical Chinese participants. RESULTS: The final study sample included 1545 respondents: medical professionals (n=597, 39%), neurologists (n=303, 20%), legal professionals (n=276, 18%) and other professionals (n=369, 24%), including 180 family members of individuals with LIS. Most of the participants (70%), especially neurologists, thought that life-sustaining treatment could not be stopped in individuals with LIS. It might be unnecessary to withdraw life-sustaining treatment, because the condition involved is not terminal and irreversible, and physical treatment can be beneficial for the patient. A significant proportion (59%) of respondents would like to be kept alive if they were in that condition; however, older people thought the opposite. Families experience the stress of caring for individuals with LIS. The mean (SD) quality of life score for relatives was 0.73 (2.889) (on a -5, +5 scale), which was significantly lower than that of non-relatives, 1.75 (1.969) (P<0.001). CONCLUSIONS: Differences in opinions about end of life in LIS are affected by personal characteristics. The current survey did not identify a dissociation between personal preferences and general opinions, potentially because of a social uniformity in China where individualism is less pronounced. Future open-ended surveys could identify specific needs of caregivers so that strategic interventions to reduce ethical debasement are designed.


Assuntos
Ética Médica , Cuidados para Prolongar a Vida/ética , Cuidados para Prolongar a Vida/psicologia , Síndrome do Encarceramento/psicologia , Síndrome do Encarceramento/reabilitação , Adulto , Povo Asiático/psicologia , Atitude do Pessoal de Saúde , China , Características Culturais , Família/etnologia , Família/psicologia , Feminino , Pessoal de Saúde/ética , Pessoal de Saúde/psicologia , Humanos , Individualidade , Advogados/psicologia , Síndrome do Encarceramento/etnologia , Masculino , Pessoa de Meia-Idade , Neurologistas/ética , Neurologistas/psicologia , Qualidade de Vida/psicologia , Inquéritos e Questionários , Adulto Jovem
18.
J Law Health ; 33(1): 79-106, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31841618

RESUMO

Alfie Evans was a terminally ill British child whose parents, clinging to hope, were desperately trying to save his life. Hospital authorities disagreed and petitioned the court to enjoin the parents from removing him and taking him elsewhere for treatment. The court stepped in and compelled the hospital to discontinue life support and claimed that further treatment was not in the child's best interest. This note discusses the heartbreaking stories of Alfie and two other children whose parents' medical decisions on their behalf were overridden by the court. It argues that courts should never decide that death is in a child's best interest and compel parents to withdraw life support from their children. Such a decision is outside the scope of the judiciary. Furthermore, it argues that even in those instances when the court may or must intervene, a new framework is necessary because the current framework used by the court to determine the best interest of the child ignores fundamental realities of child psychology. Too often, as a result of the court's mistaken framework, the court illegitimately trespasses into the parental domain. By adopting a new framework, the court will intervene only when actual abuse or neglect is suspected. In all other cases, judicial restraint will be practiced and the court will show greater deference to the parents' wishes.


Assuntos
Tomada de Decisões , Dissidências e Disputas , Função Jurisdicional , Pais , Adolescente , Adulto , Terapias Complementares/ética , Terapias Complementares/legislação & jurisprudência , Ética Institucional , Ética Médica , Feminino , Humanos , Identificação Psicológica , Lactente , Cuidados para Prolongar a Vida/ética , Cuidados para Prolongar a Vida/legislação & jurisprudência , Masculino , Obrigações Morais , Autonomia Pessoal , Autonomia Profissional
19.
J Med Ethics ; 45(12): 800-801, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31604833

RESUMO

There is a strong presumption in favour of the maintenance of life. Given sufficient evidence, it can be rebutted. But the epistemic uncertainties about the best interests of patients in prolonged disorders of consciousness ('PDOC') and the wishes that they should be presumed to have are such that, in most PDOC cases, the presumption cannot be rebutted. It is conventional and wrong (or at least unsupported by the evidence) to assume that PDOC patients have no interest in continued existence. Treatment withdrawal/continuation decisions should focus on the patient as he or she actually is, and should not unjustifiably assume that the premorbid patient continues to exist unchanged, and that the actual patient has the same interests as the premorbid patient and would make the same decisions in relation to treatment as the premorbid patient would have done.


Assuntos
Ética Médica , Suspensão de Tratamento/ética , Humanos , Cuidados para Prolongar a Vida/ética , Estado Vegetativo Persistente/terapia , Incerteza
20.
BMJ Case Rep ; 12(9)2019 Sep 30.
Artigo em Inglês | MEDLINE | ID: mdl-31570361

RESUMO

A 28-year-old woman suffered a traffic accident resulting in severe head injuries with deleterious prognosis. Diagnostics further revealed a hitherto unknown pregnancy, at suspected week 9. Based on the patient's wish to donate organs, brain death protocol confirmed irreversible loss of brain function. Yet, vital pregnancy rendered organ transplantation impossible. Multiple ethical and legal issues arose, from invalidation of established legal care after brain death to the delivery of a healthy child after trauma and long-term critical care. After medicolegal and ethical counselling, pregnancy was sustained, and the goal of organ donation postponed. Critical care focused on foetal homeostasis. At 30+4 weeks, a viable girl was born via assisted vaginal delivery. Postpartal organ donation resulted in heart, kidney and pancreas transplantation. The case emphasises the medical, legal and ethical challenges to combine two apparently diametrical goals: the successful full-term pregnancy and the fulfilment of a patient's wish to donate organs.


Assuntos
Morte Encefálica , Viabilidade Fetal/fisiologia , Cuidados para Prolongar a Vida/ética , Doadores Vivos/ética , Mães , Defesa do Paciente/ética , Cuidado Pré-Natal/ética , Obtenção de Tecidos e Órgãos/ética , Adulto , Diretivas Antecipadas , Aconselhamento , Cuidados Críticos , Feminino , Humanos , Cuidados para Prolongar a Vida/métodos , Direitos do Paciente/ética , Gravidez , Resultado da Gravidez , Cuidado Pré-Natal/métodos
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