Challenging misconceptions about clinical ethics support during COVID-19 and beyond: Role, remit and representation

The pace of change and, indeed, the sheer number of clinical ethics committees (not to be confused with research ethics committees) has accelerated during the COVID-19 pandemic. Committees were formed to support healthcare professionals and to operationalise, interpret and compensate for gaps in national and professional guidance. But as the role of clinical ethics support becomes more prominent and visible, it becomes ever more important to address gaps in the support structure and misconceptions as to role and remit. The recent case of Great Ormond Street Hospital for Children NHS Foundation Trust v MX, FX and X ([2020] EWHC 1958 (Fam), [21]-[23] and [58]) has highlighted the importance of patient / family representation at clinical ethics committee meetings. The court viewed these meetings as making decisions about such treatment. We argue that this misunderstands the role of ethics support, with treatment decisions remaining with the clinical team and those providing their consent. The considered review by clinical ethics committees of the moral issues surrounding complex treatment decisions is not a matter of determining a single ethical course of action. In this article, we consider current legal understandings of clinical ethics committees, explore current concepts of ethics support and suggest how they may evolve, considering the various mechanisms of the inclusion of patients and their representatives in ethics meetings which is not standard in the UK

Les processus décisionnels partagés en soins palliatifs pédiatriques: une étude de cas éclairée par la théorie des jeux

peer reviewedLes processus décisionnels partagés sont complexes, en particulier dans le domaine des soins palliatifs pédiatriques. Donner la parole à chaque acteur -l'enfant et ses parents- est essentiel pour trouver la meilleure intervention, le traitement ou l'accompagnement le plus ajusté. Il arrive que les perspectives et souhaits parentaux diffèrent entre eux, avec l'enfant , ou avec ceux des équipes cliniques, ce qui crée des incompréhensions voire des conflits. La théorie des jeux, branche des mathématiques, trouve des applications en économie, sciences sociales, sciences politiques et en biologie. Elle vise à atteindre le meilleur équilibre parmi des acteurs ayant des intérêts différents. Nous présentons une situation clinique vécue en accompagnement à domicile d'un adolescent en fin de vie, lors de laquelle une situation familiale explosive cristallisant des points de vue divergents a pu se dénouer au travers d'un rituel co-créé au travers d'un objet tiers (moto). Cet évènement inattendu proposé par l'adolescent a permis de réconcilier la famille. Relisant cette situation au travers du prisme de la théorie des jeux , différents éléments importants sont identifiés qui potentiellement peuvent contribuer à améliorer les processus décisionnels partagés. Croisant des savoirs expérientiels et professionnels différents (économie et médecine palliative pédiatrique), nous émettons l'hypothèse que l'approche de la théorie des jeux pourrait aider les équipes soignantes à optimiser les accompagnements en soins palliatifs pédiatriques en tenant compte de la voix de l'enfant et des positions de chacun des parents pour rechercher ensemble l'intervention la plus équilibrée, c'est-à-dire qui satisfait l'ensemble des acteurs.3. Good health and well-bein

Re A (A Child) and the United Kingdom Code of Practice for the Diagnosis and Confirmation of Death: Should a Secular Construct of Death Override Religious Values in a Pluralistic Society?

The determination of death by neurological criteria remains controversial scientifically, culturally, and legally, worldwide. In the United Kingdom, although the determination of death by neurological criteria is not legally codified, the Code of Practice of the Academy of Medical Royal Colleges is customarily used for neurological (brainstem) death determination and treatment withdrawal. Unlike some states in the US, however, there are no provisions under the law requiring accommodation of and respect for residents’ religious rights and commitments when secular conceptions of death based on medical codes and practices conflict with a traditional concept well-grounded in religious and cultural values and practices. In this article, we analyse the medical, ethical, and legal issues that were generated by the recent judgement of the High Court of England and Wales in Re: A (A Child) [2015] EWHC 443 (Fam). Mechanical ventilation was withdrawn in this case despite parental religious objection to a determination of death based on the code of practice. We outline contemporary evidence that has refuted the reliability of tests of brainstem function to ascertain the two conjunctive clinical criteria for the determination of death that are stipulated in the code of practice: irreversible loss of capacity for consciousness and somatic integration of bodily biological functions

Characteristics of babies who unexpectedly survive long term after withdrawal of intensive care

Aim Occasional babies survive long term after withdrawal of intensive care despite a poor prognosis. We aimed to review in detail the clinical cases, characteristics, and outcomes of neonates with unexpected protracted survival following planned withdrawal of intensive cardiorespiratory support. Methods We reviewed infants who unexpectedly survived for more than one week following planned withdrawal of intensive care in two tertiary‐level NICUs over a seven‐year period. Results We identified eight long‐term survivors (six term, two preterm) between 2007 and 2013. All had a clinical diagnosis of grade 3 hypoxic‐ischaemic encephalopathy and severely abnormal electroencephalography and neuroimaging prior to intensive care withdrawal. Intensive care was withdrawn at five days postnatal age (range: two to nine days), but the possibility of protracted survival was discussed beforehand in only two cases. Three infants died before three months of age. Five infants remain alive, currently aged from 2.0 to 6.5 years, and all have significant neurodevelopmental problems. Conclusion Unexpected long‐term survival after neonatal intensive care withdrawal occurs occasionally but unpredictably. Significant neurodevelopmental adversity was invariable in those surviving beyond infancy. Ventilator dependency along with severely abnormal electroencephalography and neuroimaging is still compatible with long‐term survival. The possibility of protracted survival should be discussed routinely with parents before intensive care withdrawal

Babies' rights, when human rights begin

All the Articles in the UN 1989 Convention on the Rights of the Child can apply to babies from birth as shown in this chapter. It begins by examining legal and natural rights. Natural rights that are inalienable to all human beings especially apply to babies. Protection, provision and participation rights are reviewed in turn for their relevance to babies as well as to every age group. Babies’ rights are better understood as human all-age rights than as separate junior versions of rights. Recent psychological research on preverbal babies’ moral and scientific understanding opens new insights into how ‘human’ young babies are. The authors draw on the research literature and also on their daily experiences of living with babies, Ren in Tokyo Japan and Kolbe in Dorset England. The chapter aims to illustrate the practical meaning of the UNCRC’s ‘recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family’

Opinions of Argentinean neonatologists on the initiation of life-sustaining treatment in preterm infants

Background: In June 2014, the Argentinean Ministry of Health published guidelines for the management of neonates born at the limit of viability (≤25 weeks of gestation). We explored the opinion of neonatologists in Buenos Aires, Argentina, regarding the initiation of life‐sustaining treatment (LST) in critically ill neonates, focusing on the effect of sociocultural factors on their opinion. Methods: An anonymous survey was designed to explore the opinions of Argentinean neonatologists on whether or not to initiate LST in newborns born prematurely. Five hundred eighty neonatologists from 36 neonatal units were invited to participate, and 315 specialists from 34 neonatal units completed the survey (response rate 54%). The survey was conducted between June 2014 and February 2015. Results: At 22 weeks, 9.5% (30/315) of the neonatologists answered they would begin LST on neonates born, 42.5% (134/315) at 23 weeks, 37% (117/315) at 24 weeks, 7% (22/315) at 25 weeks, and 4% (12/315) at ≥26 weeks. Cumulatively, then 96% of participants stated they would start LST at 25 weeks of gestation or less. On multivariate analysis, a “transcendent” value of life and lack of consideration of the local legal framework for making medical decisions in the delivery room were statistically associated with an opinion in favor of initiation of LST in neonates born at the limit of viability. More than 50% of the Argentinean neonatologists surveyed answered they would initiate treatment at a gestational age of less than 23 weeks, despite the fact that the recommendations of the Argentinean Ministry of Health are to only give comfort care for these neonates. The opinion of most Argentinean neonatologists surveyed thus differs from that recommended by the guidelines of Argentina. Conclusion: The most frequent opinion of Argentinean neonatologists was to initiate LST in neonates at the limit of viability. Certain factors, in particular the sense of a transcendent meaning to life and lack of consideration of the local legal framework for making medical decisions in the delivery room, seem to influence the decision to start LST.Fil: Silberberg, Agustín. Universidad Austral. Facultad de Ciencias Biomédicas; ArgentinaFil: Villar, Marcelo Jose. Universidad Austral. Facultad de Ciencias Biomédicas; Argentina. Universidad Austral. Facultad de Ciencias Biomédicas. Instituto de Investigaciones en Medicina Traslacional. Consejo Nacional de Investigaciones Científicas y Técnicas. Oficina de Coordinación Administrativa Parque Centenario. Instituto de Investigaciones en Medicina Traslacional; ArgentinaFil: Torres, Silvio. Universidad Austral. Facultad de Ciencias Biomédicas; Argentin

A critical realist analysis of consent to surgery for children, human nature and dialectic: the pulse of freedom

Consent can only be voluntary, freely given and uncoerced. Can this legal adult standard also apply to children? High-risk surgery is seldom a wanted choice, but compared with the dangers of the untreated problem, surgery can become the least unwanted option. Critical realism helps to reveal explicit and hidden levels of informed and voluntary consent at empirical, actual and real levels, on the four planes of social being and through the four-stage dialectic. Instead of starting with the rational-legal adult patient standard of consent, and assessing how young children fail this, understanding of consent could start at the other end of life. What does innate physical-social-moral-intuitive human nature in the emotional embodied person tell us about the meaning and purpose of consent/refusal for self-preservation, for avoiding suffering and promoting wellbeing? This discussion paper considers examples of life-giving treatment for children, and ethical dilemmas including one of conjoined twins, when only one child could survive separation

Cuidados paliativos peri e neonatais : revisão bibliográfica a propósito de um caso clínico

Trabalho Final do Curso de Mestrado Integrado em Medicina, Faculdade de Medicina, Universidade de Lisboa, 2016Cuidados paliativos peri e neonatais (CPPN) são cuidados de saúde holísticos e dinâmicos, que envolvem uma equipa multidisciplinar. A sua abordagem é centrada no feto/recém-nascido (RN) e sua família, devendo estes cuidados estar disponíveis em todos os casos de doença limitadora de vida ou potencialmente fatal (LV/PF). O seu objetivo é garantir a melhor qualidade de vida possível para os RN e respetivas famílias, tendo em vista medidas fundamentais como o alívio da dor e outros sintomas, apoio emocional, psicológico e espiritual. Estas medidas devem estar presente desde o diagnóstico, evolução da doença, em fim de vida, após a morte e durante o luto. Apresenta-se o caso clínico de um recém-nascido do sexo feminino, no qual foi diagnosticado trissomia 18, após o nascimento, sendo esta uma patologia com indicação para CPPN. Após discussão com a mãe, foram iniciadas medidas de conforto e excluídas terapêuticas fúteis. Em CPPN é importante uma comunicação clara e permanente entre a equipa de saúde e com os familiares, envolvendo-os no planeamento e incentivando-os a participar nos cuidados, criando memórias que os vão ajudar a lidar de forma mais saudável com o luto.Peri and neonatal palliative care is holistic and dynamic care, involving a multidisciplinary team. Its approach is focused on the newborns and their families, and it should be available to all cases of limited live time or life-threatening illness. Its purpose is to ensure the best possible quality of life for the newborns and their families, considering fundamental measures such as relief of pain and other symptoms and emotional, psychological and spiritual support. These measures should be present throughout the progression of the disease, end of life, after death and during grief. It is reported the case of a female newborn, who was diagnosed Trisomy 18, after birth, which is a disease with indication for peri and neonatal palliative care. After discussion with the mother, comfort measures were decided and futile therapeutics excluded. In peri and neonatal palliative care is important a clear and constant communication between the health care team and the family involving them in the planning of medical care and encouraging them to be present, participate in care, and create memories that will help deal more healthily with grief

Nutrição no paciente pediátrico em cuidados paliativos

Palliative care is a type of approach that seeks the humanization and wellbeing of patients with chronic conditions, regardless of the underlying disease. In this sense, seeking the joint participation of a multidisciplinary care team, the patient, and his or her family is the main goal. In pediatric patients in this situation, nutrition should be regarded as an approach that is able to provide benefits but that can also bear risks. Therefore, its indication should be subject to a careful and continuous evaluation. Indication for hydration and artificial nutrition (HAN) is based on respect for autonomy, beneficence, non-maleficence, and justice. Nutrition in palliative patients should be addressed in the same ways as other care processes, such as antibiotic therapy or mechanical ventilation. Therefore, HAN should be indicated to improve patient comfort and clinical outcomes, but when HAN results in suffering or discomfort, outweighing its benefits it should be contraindicated or discontinued.Los cuidados paliativos son una forma de enfoque que busca la humanización y la comodidad del paciente en una situación de enfermedad crónica, independientemente de la enfermedad subyacente. En esta perspectiva, la búsqueda de la participación conjunta del equipo de atención multidisciplinar, el paciente y su familia es el principal objetivo. La nutrición en el paciente pediátrico en esta situación debe verse como algo que puede ofrecer beneficios, pero también riesgos, y su indicación debe ser objeto de una evaluación minuciosa y continua. Las indicaciones de hidratación y nutrición artificial (HNA) se basan en criterios de autonomía, beneficencia, no maleficencia y justicia. La nutrición en pacientes paliativos debe verse de la misma forma que otros frentes asistenciales, como la antibioticoterapia o la ventilación mecánica. Por tanto, la HNA debe indicarse como una fuente de comodidad para el paciente y la capacidad de mejorar los resultados clínicos, pero cuando se traduce en sufrimiento o malestar mayor que los beneficios, debe contraindicarse o suspenderse.Os cuidados paliativos são uma forma de abordagem que busca a humanização e o conforto do paciente em situação de doença crônica, independente da doença de base. Nesta perspectiva, o objetivo principal é a busca da participação conjunta da equipe multidisciplinar, do paciente e de sua família. A nutrição do paciente pediátrico em esta situação deve ser vista como algo que pode trazer benefícios, assim como riscos, e sua indicação deve ser objeto de avaliação criteriosa e contínua. As indicações de hidratação e nutrição artificial (HNA) são baseadas em critérios de autonomia, benefício ao paciente, e equidadade. A nutrição em pacientes paliativos deve ser vista da mesma forma que outras frentes de cuidado assistencial, como a antibioticoterapia ou a ventilação mecânica. Portanto, a HNA deve ser indicada como fonte de conforto para o paciente e a capacidade de melhorar os desfechos clínicos, mas quando o sofrimento ou desconforto è maior do que os benefícios, deve ser contra-indicada ou suspensa