Grado de disconfort del paciente crítico pediátrico y correlación con variables sociodemográficas y clínicas, analgosedación y síndrome de abstinencia. Estudio multicéntrico COSAIP (Fase 2) / Level of discomfort in critically ill paediatric patients and its correlation with sociodemographic and clinical variables, analgosedation and withdrawal syndrome. COSAIP multicentre study (Phase 2)

Introducción: Existen factores clínicos o sociodemográficos que pueden tener un impacto en el confort del paciente crítico pediátrico. El objetivo principal fue determinar el grado de disconfort de los pacientes pediátricos ingresados en las UCIP de diversos hospitales nacionales y analizar su relación con variables sociodemográficas y clínicas, sedoanalgesia y síndrome de abstinencia.Métodos: Estudio observacional, analítico, transversal y multicéntrico en 5 hospitales españoles. Se valoró el grado de analgosedación mediante el sensor BIS y las escalas de dolor adaptadas a la edad pediátrica, una vez por turno durante 24h. El grado de abstinencia se determinó con la escala Withdrawal Assessment Tool (WAT-1), una vez por turno durante 3 días consecutivos. Además, se valoró simultáneamente el grado de disconfort mediante la COMFORT Behavior Scale-versión española (CBS-ES).Resultados: Se incluyeron un total de 261 pacientes críticos pediátricos con una mediana de edad de 1,61años (RIQ=0,35-6,55). Se objetivaron puntuaciones globales de disconfort de 10,79±3,7 en el turno de mañana versus 10,31±3,3 en el de noche. Se observó asociación estadística al comparar al grupo de pacientes analgosedados con el grupo de no analgosedados en ambos turnos (χ2: 45,48; p=0,001). A la vez, también se observó una relación estadísticamente significativa (p<0,001) entre puntuaciones bajas de disconfort y menor desarrollo de síndrome de abstinencia.Conclusiones: Existe una parte de la población estudiada que padece disconfort, por lo que se hace necesario el desarrollo de protocolos específicos guiados por instrumentos válidos y testados en la práctica clínica, como la COMFORT Behavior Scale-versión española. (AU)

Introduction: There are clinical and sociodemographic factors that have an impact on the comfort of the critically ill paediatric patient. The main aim of this study was to determine the level of discomfort of paediatric patients admitted to different national hospitals, and to analyse its correlation with sociodemographic and clinical variables, analgosedation, and withdrawal syndrome.Methods: An observational, analytical, cross-sectional, and multicentre study was conducted in five Spanish hospitals. The level of analgosedation was assessed once per shift over a 24h period, using a BIS sensor, and pain with scales adapted to paediatric age population. The intensity of withdrawal syndrome was determined using the Withdrawal Assessment Tool (WAT-1) scale once per shift for 3 days. Discomfort level was simultaneous assessed using COMFORT Behaviour Scale-Spanish version (CBS-S).Results: A total of 261 critically ill paediatric patients with median age of 1.61 years (IQR=0.35-6.55) were included. An overall discomfort score of 10.79±3.7 was observed during morning compared to 10.31±3.3 observed during the night. When comparing analgosedation and non-analgosedation groups, statistically differences were found in both shifts (χ2: 45.48; P=.001). At the same time, an association was observed (P<.001) between low discomfort scores and development of withdrawal syndrome development assessed with WAT-1.Conclusions: As there is a percentage of the studied population with discomfort, specific protocols need to be developed, guided by valuated and clinically tested tools, like the COMFORT Behaviour Scale-Spanish version. (AU)

On "Not Recommending" ECMO.

The neonatologist was describing the dire situation, the complexity of the fetus's anomalies, and the options-comfort care, some resuscitation-and finished by saying, "We would not recommend ECMO …" "We would not recommend" is a curious phrase. There is something ambiguous, very nebulous about it, something passive, noncommittal, maybe even deflective. As a bioethics researcher, I wondered how this phrase is interpreted, how it influences parents' moral deliberation over their options.

Incertidumbre médica, compañera habitual en el cuidado intensivo pediátrico. Análisis a partir de un caso clínico / Medical uncertainty, a common companion in pediatric intensive care. Analysis from a clinical case / Incertesa mèdica, companya habitual en la cura intensiva pediàtrica. Anàlisi a partir d'un cas clínic

En la complejidad de las unidades de cuidado intensivo pediátrico, en donde confluyen equipo médico, pacientes y familia, la pregunta por lo ético es ineludible, como lo son también, las situaciones de incertidumbre médica.  Con el objeto de ofrecer un punto de partida para la comprensión y el manejo de la incertidumbre médica, se narra un caso clínico ficticio que pretende representar la situación, se trata la incertidumbre desde lo teórico, a partir del modelo de la Incertidumbre de Tannert, Elvers, & Jandrig (2007), y la propuesta de McCullough (2013) para la resolución moral de la incertidumbre y finalmente, se plantea la resolución del caso desde la perspectiva bioética

In the complexity of pediatric intensive care units, where medical equipment, patients and family converge, the question of ethics is unavoidable, as are also situations of medical uncertainty. In order to offer a starting point for the understanding and management of medical uncertainty, a fictitious clinical case that pretends to represent the situation is narrated, uncertainty is dealt with from the theory, based on the Tannert, Elvers, & Jandrig Uncertainty model (2007), and McCullough's proposal for the moral resolution of uncertainty (McCullough, 2013), and finally, the resolution of the case from the bioethical perspective is proposed

En la complexitat de les unitats de cura intensiva pediàtrica, on conflueixen equip mèdic, pacients I família, la pregunta per l'ètic és ineludible, com ho són també, les situacions d'incertesa mèdica. A fi d'oferir un punt de partida per a la comprensió I el maneig de la incertesa mèdica, es narra un cas clínic fictici que pretén representar la situació, es tracta la incertesa des del teòric, a partir del model de la Incertesa de Tannert, Elvers, & Jandrig (2007), I la proposta de McCullough (2013) per a la resolució moral de la incerteza I finalmente, es planteja la resolució del cas des de la perspectiva bioètica

Racial Minority Families' Preferences for Communication in Pediatric Intensive Care Often Overlooked.

OBJECTIVE: To compare the communication experiences and preferences of racial/ethnic minority and non-Hispanic white (NHW) families in the pediatric intensive care unit (PICU), including their interactions with bedside nurses. METHODS: Retrospective cohort study performed at a quaternary university-affiliated children's hospital with 70 pediatric intensive care beds. From October 2013 to December 2014, English-speaking family members of children admitted to the PICU were asked about their experiences communicating with PICU caregivers using a survey tool. RESULTS: 107 participants were included for analysis, of which 60 self-identified as a racial minority and 47 as NHW. Overall, 11% of families chose family meetings as their preferred setting for receiving information, as compared to family-centered rounds or unplanned bedside meetings. Only 50% of those with a family meeting felt they learned new information during the meeting. Chi-square statistics or Fisher's exact tests showed that minority families were less likely to report their bedside nurses spent enough time speaking with them (minority 67%, NHW 85%; p = 0.03) and less likely to receive communication from the medical team in their preferred setting (minority 63%, NHW 85%; p = 0.01). Logistic regression, controlling for covariates including education, insurance, and risk of mortality, showed that the relationship between minority status and concordance of preferred setting persisted (OR = 0.32, 95% C·I.: 0.11, 0.91). CONCLUSION: In general, families of PICU patients prefer meeting with the medical team during rounds or unplanned bedside meetings as opposed to formal family meetings. Despite this preference, minority families are less likely to receive communication from the medical team in their preferred settings. Meeting all families' communication setting needs may improve their communication experiences in the PICU.

Fast and slow thinking; and the problem of conflating clinical reasoning and ethical deliberation in acute decision-making.

Expertise in a medical specialty requires countless hours of learning and practice and a combination of neural plasticity and contextual case experience resulting in advanced gestalt clinical reasoning. This holistic thinking assimilates complex segmented information and is advantageous for timely clinical decision-making in the emergency department and paediatric or neonatal intensive care units. However, the same agile reasoning that is essential acutely may be at odds with the slow deliberative thought required for ethical reasoning and weighing the probability of patient morbidity. Recent studies suggest that inadequate ethical decision-making results in increased morbidity for patients and that clinical ethics consultation may reduce the inappropriate use of life-sustaining treatment. Behavioural psychology research suggests there are two systems of thinking - fast and slow - that control our thoughts and therefore our actions. The problem for experienced clinicians is that fast thinking, which is instinctual and reflexive, is particularly vulnerable to experiential biases or assumptions. While it has significant utility for clinical reasoning when timely life and death decisions are crucial, I contend it may simultaneously undermine the deliberative slow thought required for ethical reasoning to determine appropriate therapeutic interventions that reduce future patient morbidity. Whilst health-care providers generally make excellent therapeutic choices leading to good outcomes, a type of substitutive thinking that conflates clinical reasoning and ethical deliberation in acute decision-making may impinge on therapeutic relationships, have adverse effects on patient outcomes and inflict lifelong burdens on some children and their families.

Clinic, courtroom or (specialist) committee: in the best interests of the critically Ill child?

Law's processes are likely always to be needed when particularly intractable conflicts arise in relation to the care of a critically ill child like Charlie Gard. Recourse to law has its merits, but it also imposes costs, and the courts' decisions about the best interests of such children appear to suffer from uncertainty, unpredictability and insufficiency. The insufficiency arises from the courts' apparent reluctance to enter into the ethical dimensions of such cases. Presuming that such reflection is warranted, this article explores alternatives to the courts, and in particular the merits of specialist ethics support services, which appear to be on the rise in the UK. Such specialist services show promise, as they are less formal and adversarial than the courts and they appear capable of offering expert ethical advice. However, further research is needed into such services - and into generalist ethics support services - in order to gauge whether this is indeed a promising development.

Limitación de tratamiento de soporte vital en una Unidad de Cuidado Intensivo pediátrica chilena: 2004-2014 / Limitation of Vital Support in a Chilean Pediatric Intensive Care Unit: 2004-2014

Resumen Objetivo: Describir las frecuencias y características del proceso de Limitación de Tratamiento de So porte Vital (LTSV) en pacientes de la Unidad de Cuidados Intensivos Pediátricos (UCI) entre 2004 2014. Pacientes y Método: Estudio retrospectivo, observacional descriptivo a partir de dos registros de la UCI del Hospital Roberto del Río: 1) ficha clínica individual de seguimiento y 2) ficha de registro de indicadores de calidad incluida LTSV, ambos actualizados diariamente al iniciar la visita clínica. Desde estos registros se analizaron los casos con dilemas bioéticos en los que se propuso LTSV du rante su hospitalización en UCI ("LTSV intra-UCI"). Se menciona la población rechazada de ingresar a UCI ("LTSV pre-UCI") y los fallecidos con LTSV en cama básica. Resultados: De 7.821 ingresos a UCI en el 1,51% (118 pacientes) se establece una LTSV: ONI (Orden de No Innovación) en 78,8% de los casos, retiro de medidas terapéuticas en 14,4% y suspensión de ventilación mecánica en 6,8%. En 23,7% el diagnóstico de base fue neurológico u oncológico, para cada uno. La condición fisiopatológica predominante para una LTSV fue neurológica (39%). El tiempo de estadía en UCI triplica el promedio de estada de los egresos totales de UCI, pero es de amplia variabilidad. Conclusiones: Es factible realizar una LTSV en UCI cuando el equipo incorpora esta perspectiva al trabajo diario junto a la familia. Hay una amplia variabilidad individual en las características del proceso de LTSV, propio del ámbito de la ética clínica.

Abstract Objective: Describe the frequency and characteristics of PICU patients who undergo a process of withholding or withdrawing life-sustaining treatment (LTSV), between 2004 y 2014. Patients and Method: A retrospective, observational descriptive study, using two documents for quality assessment in the PICU of Hospital Roberto del Río: 1) daily individual patient tracking log and 2) daily record of quality indicators, including LTSV, both updated daily at the morning visit. All PICU patients with an ethical dilemma during their PICU stay in which a LTSV was proposed were included. We men tion patients rejected for admission in the ICU and those who died in basic units of the hospital with LTSV. Results: In 118 patients of 7821 PICU admissions (1,5%) we determined a LTSV: ONR (Non Resuscitation Order) for all of them, ONI (Non Innovation Order) in 78,8%, withdrawal of some therapeutics in 14,4% and withdrawal of active mechanical ventilation in 6,8%. The basic diagnosis was 23,7% for each neurologic and oncologic diseases. The predominant pathophysiologic condition leading to a LTSV was severe chronic neurologic damage (39%). The length of stay was threefold the mean PICU stay, with a large variability due to expectable individual factors when ethic decisions are involved. Conclusion: LTSV is feasible when the team is involved and this perspective is part of daily clinical analysis. The wide individual variability in the LTSV process is expectable in ethical decisions.

End-of-Life and Bereavement Care in Pediatric Intensive Care Units.

Most childhood deaths in the United States occur in hospitals. Pediatric intensive care clinicians must anticipate and effectively treat dying children's pain and suffering and support the psychosocial and spiritual needs of families. These actions may help family members adjust to their loss, particularly bereaved parents who often experience reduced mental and physical health. Candid and compassionate communication is paramount to successful end-of-life (EOL) care as is creating an environment that fosters meaningful family interaction. EOL care in the pediatric intensive care unit is associated with challenging ethical issues, of which clinicians must maintain a sound and working understanding.

Moral Distress in PICU and Neonatal ICU Practitioners: A Cross-Sectional Evaluation.

OBJECTIVES: To measure the level of moral distress in PICU and neonatal ICU health practitioners, and to describe the relationship of moral distress with demographic factors, burnout, and uncertainty. DESIGN: Cross-sectional survey. SETTING: A large pediatric tertiary care center. SUBJECTS: Neonatal ICU and PICU health practitioners with at least 3 months of ICU experience. INTERVENTIONS: A 41-item questionnaire examining moral distress, burnout, and uncertainty. MEASUREMENTS AND MAIN RESULTS: The main outcome was moral distress measured with the Revised Moral Distress Scale. Secondary outcomes were frequency and intensity Revised Moral Distress Scale subscores, burnout measured with the Maslach Burnout Inventory depersonalization subscale, and uncertainty measured with questions adapted from Mishel's Parent Perception of Uncertainty Scale. Linear regression models were used to examine associations between participant characteristics and the measures of moral distress, burnout, and uncertainty. Two-hundred six analyzable surveys were returned. The median Revised Moral Distress Scale score was 96.5 (interquartile range, 69-133), and 58% of respondents reported significant work-related moral distress. Revised Moral Distress Scale items involving end-of-life care and communication scored highest. Moral distress was positively associated with burnout (r = 0.27; p < 0.001) and uncertainty (r = 0.04; p = 0.008) and inversely associated with perceived hospital supportiveness (r = 0.18; p < 0.001). Nurses reported higher moral distress intensity than physicians (Revised Moral Distress Scale intensity subscores: 57.3 vs 44.7; p = 0.002). In nurses only, moral distress was positively associated with increasing years of ICU experience (p = 0.02) and uncertainty about whether their care was of benefit (r = 0.11; p < 0.001) and inversely associated with uncertainty about a child's prognosis (r = 0.03; p = 0.03). CONCLUSIONS: In this single-center, cross-sectional study, we found that moral distress is present in PICU and neonatal ICU health practitioners and is correlated with burnout, uncertainty, and feeling unsupported.

'Best interests' in paediatric intensive care: an empirical ethics study.

OBJECTIVE: In English paediatric practice, English law requires that parents and clinicians agree the 'best interests' of children and, if this is not possible, that the courts decide. Court intervention is rare and the concept of best interests is ambiguous. We report qualitative research exploring how the best interests standard operates in practice, particularly with decisions related to planned non-treatment. We discuss results in the light of accounts of best interests in the medical ethics literature. DESIGN: We conducted 39 qualitative interviews, exploring decision making in the paediatric intensive care unit, with doctors, nurses, clinical ethics committee members and parents whose children had a range of health outcomes. Interviews were audio-recorded and analysed thematically. RESULTS: Parents and clinicians indicated differences in their approaches to deciding the child's best interests. These were reconciled when parents responded positively to clinicians' efforts to help parents agree with the clinicians' view of the child's best interests. Notably, protracted disagreements about a child's best interests in non-treatment decisions were resolved when parents' views were affected by witnessing their child's physical deterioration. Negotiation was the norm and clinicians believed avoiding the courts was desirable. CONCLUSIONS: Sensitivity to the long-term interests of parents of children with life-limiting conditions is defensible but must be exercised proportionately. Current approaches emphasise negotiation but offer few alternatives when decisions are at an impasse. In such situations, the instrumental role played by a child's deterioration and avoidance of the courts risks giving insufficient weight to the child's interests. New approaches to decision making are needed.

[Limitation of Vital Support in a Chilean Pediatric Intensive Care Unit: 2004-2014]. / Limitación de tratamiento de soporte vital en una Unidad de Cuidado Intensivo pediátrica chilena: 2004-2014.

OBJECTIVE: Describe the frequency and characteristics of PICU patients who undergo a process of withholding or withdrawing life-sustaining treatment (LTSV), between 2004 y 2014. PATIENTS AND METHOD: A retrospective, observational descriptive study, using two documents for quality assessment in the PICU of Hospital Roberto del Río: 1) daily individual patient tracking log and 2) daily record of quality indicators, including LTSV, both updated daily at the morning visit. All PICU patients with an ethical dilemma during their PICU stay in which a LTSV was proposed were included. We men tion patients rejected for admission in the ICU and those who died in basic units of the hospital with LTSV. RESULTS: In 118 patients of 7821 PICU admissions (1,5%) we determined a LTSV: ONR (Non Resuscitation Order) for all of them, ONI (Non Innovation Order) in 78,8%, withdrawal of some therapeutics in 14,4% and withdrawal of active mechanical ventilation in 6,8%. The basic diagnosis was 23,7% for each neurologic and oncologic diseases. The predominant pathophysiologic condition leading to a LTSV was severe chronic neurologic damage (39%). The length of stay was threefold the mean PICU stay, with a large variability due to expectable individual factors when ethic decisions are involved. CONCLUSION: LTSV is feasible when the team is involved and this perspective is part of daily clinical analysis. The wide individual variability in the LTSV process is expectable in ethical decisions.

Pediatric Ethics and Communication Excellence (PEACE) Rounds: Decreasing Moral Distress and Patient Length of Stay in the PICU.

This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers' moral distress and decrease length of stay for patients with life-threatening illnesses. We evaluated the innovation using a pre/post intervention design measuring provider moral distress and comparing patient outcomes using retrospective historical controls. Physicians and nurses on staff in our pediatric intensive care unit in a quaternary care children's hospital participated in the evaluation. There were 60 patients in the interventional group and 66 patients in the historical control group. We evaluated the impact of weekly meetings (PEACE rounds) to establish goals of care for patients with longer than 10 days length of stay in the ICU for a year. Moral distress was measured intermittently and reported moral distress thermometer (MDT) scores fluctuated. "Clinical situations" represented the most frequent contributing factor to moral distress. Post intervention, overall moral distress scores, measured on the moral distress scale revised (MDS-R), were lower for respondents in all categories (non-significant), and on three specific items (significant). Patient outcomes before and after PEACE intervention showed a statistically significant decrease in PRISM indexed LOS (4.94 control vs 3.37 PEACE, p = 0.015), a statistically significant increase in both code status changes DNR (11 % control, 28 % PEACE, p = 0.013), and in-hospital death (9 % control, 25 % PEACE, p = 0.015), with no change in patient 30 or 365 day mortality. The addition of a clinical ethicist and senior intensivist to weekly inter-professional team meetings facilitated difficult conversations regarding realistic goals of care. The study demonstrated that the PEACE intervention had a positive impact on some factors that contribute to moral distress and can shorten PICU length of stay for some patients.

Limitación del esfuerzo terapéutico / Limitation of therapeutic effort

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[Limitation of the therapeutic effort in pediatric intensive care]. / Limitación del esfuerzo terapéutico en cuidados intensivos pediátricos.

Pediatric intensive care is a relatively new medical specialty, which has experienced significant technological advances in recent years. These developments have led to a prolongation of the dying process, with additional suffering for patients and their families, creating complex situations, and often causing a painful life extension. The term, limitation of the therapeutic effort refers to the adequacy and/or proportionality of the treatment, trying to avoid obstinacy and futility. The English literature does not talk about limitation of treatments, but instead the terms, withholding or withdrawal of life-sustaining treatment, are used. The removal or the non-installation of certain life support measures and the absence of CPR are the types of limitation most used. Also, there is evidence of insufficient medical training in bioethics, which is essential, as most doctors in the PICU discuss and make decisions regarding the end of life without the opinion of bioethicists. This article attempts to review the current status of knowledge concerning the limitation of therapeutic efforts to support pediatric clinical work.

Ethics of drug research in the pediatric intensive care unit.

Critical illness and treatment modalities change pharmacokinetics and pharmacodynamics of medications used in critically ill children, in addition to age-related changes in drug disposition and effect. Hence, to ensure effective and safe drug therapy, research in this population is urgently needed. However, conducting research in the vulnerable population of the pediatric intensive care unit (PICU) presents with ethical challenges. This article addresses the main ethical issues specific to drug research in these critically ill children and proposes several solutions. The extraordinary environment of the PICU raises specific challenges to the design and conduct of research. The need for proxy consent of parents (or legal guardians) and the stress-inducing physical environment may threaten informed consent. The informed consent process is challenging because emergency research reduces or even eliminates the time to seek consent. Moreover, parental anxiety may impede adequate understanding and generate misconceptions. Alternative forms of consent have been developed taking into account the unpredictable reality of the acute critical care environment. As with any research in children, the burden and risk should be minimized. Recent developments in sample collection and analysis as well as pharmacokinetic analysis should be considered in the design of studies. Despite the difficulties inherent to drug research in critically ill children, methods are available to conduct ethically sound research resulting in relevant and generalizable data. This should motivate the PICU community to commit to drug research to ultimately provide the right drug at the right dose for every individual child.

Dilemmas in undertaking research in paediatric intensive care.

Providing evidence-based interventions for infants and children is important in paediatric intensive care, where decision making impacts most acutely on morbidity and mortality. However, despite the major progress of medicine in the 21st century, we still lack this evidence for majority of the decisions we make. In this article, we explore and suggest possible solutions for several dilemmas faced by paediatric intensive care researchers. These include ethical dilemmas such as validity of informed consent, use of deferred consent, balancing risk versus benefit and methodological dilemmas such as how to generate high-quality evidence with low-patient volume, choice of valid outcome measures and how best to use research and researchers' networks.