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.

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.

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.

[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.

[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.

When they believe in miracles.

Brierley et al argue that in cases where it is medically futile to continue providing life-sustaining therapies to children in intensive care, medical professionals should be allowed to withdraw such therapies, even when the parents of these children believe that there is a chance of a miracle cure taking place. In reasoning this way, Brierley et al appear to implicitly assume that miracle cures will never take place, but they do not justify this assumption and it would be very difficult for them to do so. Instead of seeking to override the wishes of parents, who are waiting for a miracle, it is suggested that a better response may be to seek to engage devout parents on their own terms, and encourage them to think about whether or not continuing life-sustaining therapies will make it more likely that a miracle cure will occur.

Should religious beliefs be allowed to stonewall a secular approach to withdrawing and withholding treatment in children?

Religion is an important element of end-of-life care on the paediatric intensive care unit with religious belief providing support for many families and for some staff. However, religious claims used by families to challenge cessation of aggressive therapies considered futile and burdensome by a wide range of medical and lay people can cause considerable problems and be very difficult to resolve. While it is vital to support families in such difficult times, we are increasingly concerned that deeply held belief in religion can lead to children being potentially subjected to burdensome care in expectation of 'miraculous' intervention. We reviewed cases involving end-of-life decisions over a 3-year period. In 186 of 203 cases in which withdrawal or limitation of invasive therapy was recommended, agreement was achieved. However, in the 17 remaining cases extended discussions with medical teams and local support mechanisms did not lead to resolution. Of these cases, 11 (65%) involved explicit religious claims that intensive care should not be stopped due to expectation of divine intervention and complete cure together with conviction that overly pessimistic medical predictions were wrong. The distribution of the religions included Protestant, Muslim, Jewish and Roman Catholic groups. Five of the 11 cases were resolved after meeting religious community leaders; one child had intensive care withdrawn following a High Court order, and in the remaining five, all Christian, no resolution was possible due to expressed expectations that a 'miracle' would happen.

Caring for children in pediatric intensive care units: an observation study focusing on nurses' concerns.

Children in the pediatric intensive care unit are indisputably in a vulnerable position, dependent on nurses to acknowledge their needs. It is assumed that children should be approached from a holistic perspective in the caring situation to meet their caring needs. The aim of the study was to unfold the meaning of nursing care through nurses' concerns when caring for children in the pediatric intensive care unit. To investigate the qualitative aspects of practice embedded in the caring situation, the interpretive phenomenological approach was adopted for the study. The findings revealed three patterns: medically oriented nursing--here, the nurses attend to just the medical needs, and nursing care is at its minimum, leaving the children's needs unmet; parent-oriented nursing care--here, the nursing care emphasizes the parents' needs in the situation, and the children are viewed as a part of the parent and not as an individual child with specific caring needs; and smooth operating nursing care orientation--here, the nursing care is focused on the child as a whole human being, adding value to the nursing care. The conclusion drawn suggests that nursing care does not always respond to the needs of the child, jeopardizing the well-being of the child and leaving them at risk for experiencing pain and suffering. The concerns present in nursing care has been shown to be the divider of the meaning of nursing care and need to become elucidated in order to improve the cultural influence of what can be seen as good nursing care within the pediatric intensive care unit.

Racial disparities in pediatric intensive care unit admissions.

OBJECTIVES: Racial disparities in therapies and outcomes in adult and neonatal ICUs are well documented; however, little is known regarding racial disparities in pediatric intensive care unit (PICU). Our objective was to determine whether racial disparities exist in the admission of critically ill children to the PICU. METHODS: We retrospectively analyzed admissions to a PICU in a tertiary care pediatric hospital. Summarized demographic data was analyzed from the county health department. RESULTS: Of the 4676 admissions to the PICU between January 1, 1997 and December 31, 1999, 1030 children were <48 months of age, lived in Shelby County, TN, and were either African American (789, 76.6%) or non-Hispanic white (241, 23.4%). The surrounding county was comprised of approximately 58% African American and 41% non-Hispanic white children ≤ 48 months of age. A history of premature birth was more common in African American children than non-Hispanic white children (46.8% vs. 32.8%; P < 0.0001). Mortality was 5.7% overall and was not significantly different between African Americans and non-Hispanic whites but was higher for those children with a history of premature birth (4.6% vs. 7.1%, P < 0.026). The overall relative risk of admission to the PICU for African American children was 2.12 (95% CI, 1.66-2.74), for African American children with a history of premature birth was 1.44 (95% CI, 0.96-2.21), and for full-term African American children was 1.82 (95% CI, 1.33 -2.49). CONCLUSIONS: Racial differences in admission to the PICU exist with African American children having a greater risk for PICU admission than non-Hispanic white children.

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.

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.

[What become the decisions of limitation of treatments after discharge from the paediatric intensive care unit?]. / Que deviennent les décisions de limitation ou d'arrêt des traitements actifs à la sortie de réanimation pédiatrique ?

UNLABELLED: The fact that some children may survive despite a decision of limitation of treatments (DLT) is taken in Paediatric Intensive Care Unit (PICU) is a recent data. Although the French-speaking Group of Paediatric Intensive and Emergency Care (GFRUP) has published guidelines for limitation of treatments in PICU, outcome of these surviving children has not yet been studied. PURPOSES: To evaluate transmission of data concerning DLT in PICU toward teams in charge of children after the PICU stay and to evaluate perennility of these decisions. METHOD: Cohort study in children for whom DLT was discussed and who were discharged from PICU between 2002 and 2006. The study included an analysis of the medical files and discussions with the physicians in charge of children at the time of the study, including their responses to standardised scenarios concerning the outcome of their patients. RESULTS: Among the 96 children for whom DLT was discussed in PICU, 37 were discharged toward another unit. Only 1 discharge letter mentioned the DLT. At the time of the study, the Pediatric Overall Performance Category (POPC) score had increased in 16 children and was stable in 12. All the 6 children with a worsening POPC score died, without PICU readmission. The physicians in charge of children after the PICU stay did not remember any DLT. For 18 children (including 8 with previous DLT) PICU readmission would be proposed in case of life-threatening event. Their median POPC score at the time of study was lower than that of other children (3 versus 4; p=0.001). CONCLUSION: This study shows a lack of DLT data transmission, which is in contradiction with the GFRUP's guidelines. Correction of this lack is essential to improve cooperation between units in charge of these children.

'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.

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.