Providing clarity around ethical discussion: development of a neonatal intervention score.

Aim: To develop a Neonatal Intervention Score (NIS) to describe the clinical trajectory of a neonate throughout their neonatal intensive care unit (NICU) admission.

Methods: The NIS was developed by modifying the Neonatal Therapeutic Intervention Scoring System (NTISS) to reflect illness severity, dependency on life-sustaining interventions and overall life trajectory on a longitudinal basis, rather than illness burden. Validity for longitudinal use within the NICU was tested by calculating the score for 99 preterm babies born less than 28 weeks at predetermined time points throughout their admission to tertiary level care at two institutions.

A pragmatist approach to clinical ethics support: overcoming the perils of ethical pluralism.

In today's pluralistic society, clinical ethics consultation cannot count on a pre-given set of rules and principles to be applied to a specific situation, because such an approach would deny the existence of different and divergent backgrounds by imposing a dogmatic and transcultural morality. Clinical ethics support (CES) needs to overcome this lack of foundations and conjugate the respect for the difference at stake with the necessity to find shared and workable solutions for ethical issues encountered in clinical practice. We argue that a pragmatist approach to CES, based on the philosophical theories of William James, John Dewey, and Charles Sanders Peirce, can help to achieve the goal of reaching practical solutions for moral problems in the context of today's clinical environment, characterized by ethical pluralism.

"If an acute event occurs, what should we do?" Diverse ethical approaches to decision-making in the ICU.

The aim of this paper is to analyze an Intensive Care Unit case that required ethics consultation at a University Hospital in Northern Italy. After the case was resolved, a retrospective ethical analysis was performed by four clinical ethicists who work in different healthcare contexts (Italy, the United States, and Switzerland). Each ethicist used a different method to analyze the case; the four general approaches provide insight into how these ethicists conduct ethics consultations at their respective hospitals.

The therapeutic space and doctor-parent relationship in paediatrics: trainees' experiences and perspectives.

Aim: To explore paediatric trainees' experiences and perspectives regarding interactions and relationships between physicians and patients' parents.

Methods: Email survey was sent to AAP Section of Pediatric Trainees members. Trainees were asked about 40 interactions with parents as well as perceived benefits/risks and potential influences.

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.

Diagnostic and Therapeutic Misconception: Parental Expectations and Perspectives Regarding Genetic Testing for Developmental Disorders.

Parents' understanding/expectations regarding genetic testing for children with developmental disorders were explored. Within a month of testing, interviews were conducted with 57 parents. Many (74%) could not recall the nature of testing.

Geriatric palliative care: a view of its concept, challenges and strategies.

In aging societies, the last phase of people's lives changes profoundly, challenging traditional care provision in geriatric medicine and palliative care. Both specialties have to collaborate closely and geriatric palliative care (GPC) should be conceptualized as an interdisciplinary field of care and research based on the synergies of the two and an ethics of care.Major challenges characterizing the emerging field of GPC concern (1) the development of methodologically creative and ethically sound research to promote evidence-based care and teaching; (2) the promotion of responsible care and treatment decision making in the face of multiple complicating factors related to decisional capacity, communication and behavioural problems, extended disease trajectories and complex social contexts; (3) the implementation of coordinated, continuous care despite the increasing fragmentation, sectorization and specialization in health care.

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 Perspectives Regarding Outcomes of Very Preterm Infants: Toward a Balanced Approach.

Objectives: To explore parental perspectives regarding their preterm child at 18 months corrected age and to investigate whether reported answers correlate with level of neurodevelopmental impairment (NDI) as defined by clinicians. We hypothesized that parents would report more negative concerns with increasing level of NDI.

Study Design: This study included 190 infants born <29 weeks of gestational age in 2009-2012 at 1 tertiary university health center.

Improving neonatal care with the help of veteran resource parents: An overview of current practices.

Over the past decade, veteran parents who have lived a neonatal intensive care unit (NICU) experience have become increasingly involved as 'resource parents' to provide peer-to-peer support to "new" NICU parents. These parents can provide a unique form of support to new parents. They can also assume other roles in clinical care, research, administration and/or teaching, but those roles are rarely described in the literature.

Always a burden? Healthcare providers' perspectives on moral distress.

Background: Current conceptualisations of moral distress largely portray a negative phenomenon that leads to burnout, reduced job satisfaction and poor patient care.

Objective: To explore clinical experiences, perspectives and perceptions of moral distress in neonatology.

Design: An anonymous questionnaire was distributed to medical and nursing providers within two tertiary level neonatal intensive care units (NICUs)-one surgical and one perinatal-seeking their understanding of the term and their experience of it.

The use and misuse of moral distress in neonatology.

The neonatal intensive care unit is recognized as a stressful environment; the nature of caring for sick babies with uncertain outcomes and the need to make difficult decisions results in a work place where moral distress is prevalent. According to the prevailing definition, moral distress occurs when the provider believes that what is "done" is not the right course of action, with an element of constraint: the provider has no choice but to act this way. This can lead to adverse outcomes, including burnout and a change of career.

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.

Provider Perspectives Regarding Resuscitation Decisions for Neonates and Other Vulnerable Patients.

Objectives: To use structured surveys to assess the perspectives of pediatric residents and neonatal nurses on resuscitation decisions for vulnerable patients, including neonates.

Study Design: Pediatric providers were surveyed using scenarios for 6 critically ill patients of different ages with outcomes explicitly described. Providers were asked (1) whether resuscitation was in each patient's best interest; (2) whether they would accept families' wishes for comfort care (no resuscitation); and (3) to rank patients in order of priority for resuscitation.

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.

Using internal and external reviewers can help to optimise neonatal mortality and morbidity conferences.

Aim: This study determined whether there was a difference in the conclusions reached by neonatologists in morbidity and mortality conferences based on their level of involvement in a case.

Methods: All neonatal deaths occurring between August 2014 and September 2015 at the neonatal intensive care unit of Sainte-Justine Hospital, Montreal, Quebec, Canada, were reviewed by internal physicians involved in the case and external physicians who were not. The reviewers were asked to identify positive and negative clinical practice items and provide written recommendations.

Changes in perinatal hospital deaths occurring outside the neonatal intensive care unit over a decade.

Aim: Perinatal deaths occurring outside the neonatal intensive care unit (NICU) are rarely recorded in outcome studies, despite having a direct impact on perinatal statistics. Our aim was to investigate the timing and modes of perinatal deaths that occurred outside the NICU and changes over time.

Method: We reviewed all perinatal deaths from 22 weeks of gestation onwards, without NICU admissions, during two periods in a Canadian tertiary mother and baby hospital and categorised deaths according to nine specific categories.

Personalized Antenatal Consultations for Preterm Labor: Responding to Mothers' Expectations.

Objective: To explore prospective mothers' perspectives regarding antenatal consultations by neonatology teams for threatened preterm delivery.

Study Design: In a prospective multicenter study, women at risk of preterm delivery between 26 and 32 weeks of gestational age were surveyed during the 72 hours following their antenatal consultation. The questionnaire used was developed and validated during a single-center study.

International variations in application of the best-interest standard across the age spectrum.

Objective: Ethically and legally, assertions that resuscitation is in a patient's best interest should be inversely correlated with willingness to forego intensive care (and accept comfort care) at the surrogate's request. Previous single country studies have demonstrated a relative devaluation of neonates when compared with other critically ill patients.

Study Design: In this international study, physicians in Argentina, Australia, Canada, Ireland, The Netherlands, Norway and the United States were presented with eight hypothetical vignettes of incompetent critically ill patients of different ages.

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

Unlabelled: 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.

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

Unlabelled: 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.