Antoine Payot

Personalized Decision Making: Practical Recommendations for Antenatal Counseling for Fragile Neonates

Emphasis has been placed on engaging parents in processes of shared decision making for delivery room management decisions of critically ill neonates whose outcomes are uncertain and unpredictable. The goal of antenatal consultation should rather be to adapt to parental needs and empower them through a personalized decision-making process. This can be done by acknowledging individuality and diversity while respecting the best interests of neonates. The goal is for parents to feel like they have agency and ability and are good parents, before birth, at birth, and after, either in the NICU or until the death of their child.

Cognitive enhancement in children and adolescents: is it in their best interests?

Evidence suggests children and adolescents are consuming stimulants and nonstimulants in the hopes of improving academic performance through cognitive enhancement. As such, clinicians may be faced with requests to prescribe enhancers for their paediatric patients. In this article, we analyse the ethics of cognitive enhancement in paediatrics in the light of the best interests standard, a guiding principle, often used to make decisions for minors in moral, legal, social and medical contexts.

The ‘ouR‐HOPE’ approach for ethics and communication about neonatal neurological injury

Predicting neurological outcomes of neonates with acute brain injury is an essential component of shared decision‐making, in order to guide the development of treatment goals and appropriate care plans. It can aid parents in imagining the childs future, and guide timely and ongoing treatment decisions, including shifting treatment goals and focusing on comfort care. However, numerous challenges have been reported with respect to evidence‐based practices for prognostication such as biases about prognosis among clinicians. Additionally, the evaluation or appreciation of living with disability can differ, including the well‐known disability paradox where patients self‐report a good quality of life in spite of severe disability. Herein, we put forward a set of five practice principles captured in the “ouR‐HOPE” approach (Reflection, Humility, Open‐mindedness, Partnership, and Engagement) and related questions to encourage clinicians to self‐assess their practice and engage with others in responding to these challenges. We hope that this proposal paves the way to greater discussion and attention to ethical aspects of communicating prognosis in the context of neonatal brain injury.

Survey highlights the need for specific interventions to reduce frequent conflicts between healthcare professionals providing paediatric end-of-life care

This study explored how paediatric healthcare professionals experienced and coped with end‐of‐life conflicts and identified how to improve coping strategies.

Focusing on relationships, not information, respects autonomy during antenatal consultations

Policy statements regarding antenatal consultations for preterm labour are guided by physicians’ concerns for upholding the legal doctrine of informed consent, through the provision of standardised homogeneous medical information. This approach, led by classical in‐control conceptions of patient autonomy, conceives moral agents as rational, independent, self‐sufficient decision‐makers. Recent studies on these antenatal consultations have explored patients’ perspectives, and these differ from guidelines’ suggestions. Relational autonomy – which understands moral agents as rational, emotional, creative and interdependent – resonates impressively with these new data.

Comment on “Adult ICU ventilators to provide neonatal ventilation: a lung simulator study”

Marchese et al. studied the performances of five ventilators designed to ventilate patients of all ages and sizes from neonates to adults [1]. They concluded that all ventilators were able to equal the performance of a specific neonatal ventilator (Babylog 8000 plus). Although we agree with those conclusions, we would like to comment on two points raised by this manuscript: trigger characteristics and the reproducibility of the tests. Trigger delays of 100 ms are reported. This is quite long for neonates for whom inspiratory time is frequently set at 300 ms and may be responsible for asynchrony. We performed a similar test on three respirators with a resistance of 50 cmH2O/L/s, compliance of 2 mL/ cmH2O, and a P0.1 of -2 cmH2O on our bench test composed of a 5601i Adult/Infant PneuView (Michigan Instruments Inc.) test lung with pressures and flow rates independently recorded at the T-piece with a Biopac MP150 system connected to a computer. The pressure to trigger was 0.08–0.14 cmH2O and the time to trigger ranged between 45 and 60 ms (Fig. 1). Our results are similar to other reports [2]. The discrepancy in the trigger delay may be due to the definition of breathing effort. To standardize breathing effort, negative pressure produced in 100 ms is usually used (P0.1) [2]. In adults, a P0.1 of -2 and -4 cmH2O correspond to normal and strong effort, respectively [3]. For children, Harikumar et al. measured a maximal P0.1 of -2.4 (0.9–6.1) cmH2O [4]. A breathing effort of -2 cmH2O probably corresponds to a strong effort for neonates. The advantages of evaluating the performances of ventilators on a bench test are both (1) to reproduce clinical conditions that we may have difficulties in observing and analyzing in clinical practice and (2) to strictly control those conditions so as to obtain data reproducibility. Marchese et al. reported standard deviations of around 50% for the measured values in several tests. Such differences are uncommon when working on a bench test as we theoretically control all parameters (compliance, resistance, ventilator settings, breathing effort). We do not have much experience with the IngMar ASL5000 lung simulator and it may be that this simulator has some unknown limits, explaining such a lack of reproducibility.

Resilience Rather than Medical Factors: How Parents Predict Quality of Life of Their Sick Newborn

Objective To assess the influence of resiliency and stress on parental perspectives of the future quality of life (QOL) of neonatal intensive care unit (NICU) newborns at high risk of neurodevelopmental disability. Study design We conducted a prospective multicenter questionnaire study. Perspectives from parents of newborns at high risk of disability as per neonatal follow‐up criteria were compared with a low‐risk group consisting of parents of all other NICU newborns. Parental anxiety and resiliency, measured using Brief Symptom Inventory and Sense of Coherence scales, respectively, were associated with QOL projections. Results Parents returned 129 (81%) questionnaires. Parents considering their newborn as currently sicker were more stressed (P = .011) and worried about future physical (P < .001) and mental (P < .001) health, QOL (P < .001), coping (P = .019), and financial (P < .001) and emotional (P = .002) impact on the family. Ooverall, there was no difference between parents of high‐risk and low‐risk newborns on QOL projections. Almost all parents projected a good future QOL. Less resilient parents projected more pain (P = .04), more financial (P = .019), and emotional (P = .031) impact on their family, and were 10 times more likely to predict that their newborn would remain chronically ill. Conclusions Parental projection of future QOL of NICU newborns is not associated with risk of disability. Most parents predict overall a good future QOL and focus more on familial impact. The Sense of Coherence scale may be used in clinical settings to identify less resilient parents.

A shared vision of quality of life: Partnering in decision-making to understand families’ realities

Quality of life (QOL) measures are increasingly used when important prognostication and treatment decisions need to be made in the care of a critically ill child. Unfortunately, health-care professionals and families experience difficulties when attempting to accurately predict and estimate QOL for a patient. Aspects such as subjectivity, complexity and adaptation to illness play an important role in how QOL is ultimately experienced. This often leads to inaccurate estimates of QOL, when performed by individuals other than the patient, such as clinicians or family members. In order to make decisions in the best interest of the patient, a partnership between families and clinicians must be fostered, based on communication, trust and mutual understanding of values. This article will attempt to describe some of the challenges that come into play when assessing QOL for a patient and will provide tools for building a clinician-family partnership in the decision-making process.

Antenatal consultations for preterm labour: how are future mothers reassured?

Objective To evaluate whether the antenatal consultation for preterm labour worries or reassures women, and to identify factors contributing to these feelings. Design This is a prospective survey study from April 2012 to September 2013. This mixed-methodology tool was co-constructed with patients and first tested in a single-centre pilot study. Setting Three university-affiliated, tertiary care, high-risk obstetrics inpatient units in Quebec, Canada. Participants Women hospitalised with threatened preterm labour between 26 and 32 weeks’ gestational age completed the survey within 72 hours of an antenatal consultation by neonatology. 341 women were invited to participate and 226 mothers completed the survey (72% response rate), at a median gestational age of 30 weeks. Main outcome measures Participant worry, reassurance and change in perception after the antenatal consultation were the main outcome measures. Multivariable logistic regression was used to identify factors associated with these outcomes. Results 23% of participants were worried by the consultation, and 87% were reassured by it. Lower gestational age and higher maternal education were associated with feeling worried (adjusted OR=0.83, 95% CI 0.70 to 0.99; and adjusted OR=2.15, 95% CI 1.04 to 4.44, respectively). Longer consultations were associated with reassurance (adjusted OR=8.21, 95% CI 2.67 to 25.26). Women were reassured by (1) feeling well informed about prematurity with optimistic outlooks, and (2) a trusting and reassuring expert neonatology team. High-quality interactions with neonatologists were associated with reassurance, while poorer communications were associated with feelings of worry. Conclusions To be reassuring, neonatologists should strive to establish a trusting relationship with mothers, in which realistic and clear, but optimistic, information is offered.

Termination of Pregnancy and Perinatal Palliative Care in the Case of Fetal Anomaly: Why Is There so Much Incoherence?

The question of the fetus as a patient is sensitive and we cannot ignore it. To deny the fetus any kind of status is troubling, especially when all prenatal screening and diagnostic tests are directed toward evaluating the fetus’s health and development. On the other hand, one can understand the risks of allowing the fetus to have its own juridical status, leading to the possible slippery slope where a pregnant woman could be neglected as a person for the benefit of her fetus. Can we find middle ground between these extremes to allow the fetus some kind of a social importance, without neglecting women’s right to be in charge of their own bodies and responsible for their fetuses? While medicine has been giving a face to fetuses through technology, shouldn’t we recognize its responsibility towards defining the status of the fetus?