Between hope and disillusionment: ECMO seen through the lens of nurses working in a neonatal and paediatric intensive care unit.

BACKGROUND: Using extracorporeal membrane oxygenation (ECMO) in paediatric and neonatal intensive care units (PICU/NICU) creates ethical challenges and carries a high risk for moral distress, burn out and team conflicts. AIM: The study aimed to gain a more comprehensive understanding of the underlying factors affecting moral distress when using ECMO for infants and children by examining the attitudes of ECMO nurses. METHODS: Four focus groups discussions were conducted with 21 critical care nurses working in a Swiss University Children's Hospital. Purposive sampling was adopted to identify research participants. The data were analysed using reflexive thematic analysis. RESULTS: Unlike "miracle machine" stories in online media reports, specialized nurses working in PICU/NICU expressed both their hopes and fears towards this technology. Their accounts also contained references to events and factors that triggered experiences of moral distress: the unspeakable nature of the death of a child or infant; the seemingly lack of honest and transparent communication with parents; the apparent loss of situational awareness among doctors; the perceived lack of recognition for the role of nurses and the variability in end-of-life decision-making; the length of time it takes doctors to take important treatment decisions; and the resource intensity of an ECMO treatment. CONCLUSION: The creation of a multidisciplinary moral community with transparent information among all involved health care professionals and the definition of clear treatment goals as well as the implementation of paediatric palliative care for all paediatric ECMO patients should become a priority if we want to alleviate situations of moral distress. RELEVANCE FOR CLINICAL PRACTICE: The creation of a multidisciplinary moral community, clear treatment goals and the implementation of palliative care for all paediatric ECMO patients are crucial to alleviate situations of moral distress for nurses, and thus to improve provider well-being and the quality of patient care in PICU/NICU.

Extracorporeal Membrane Oxygenation Candidacy Decisions: An Argument for a Process-Based Longitudinal Approach.

Are all children extracorporeal membrane oxygenation (ECMO) candidates? Navigating ECMO decisions represents an enormous challenge in pediatric critical care. ECMO cannulation should not be a default option as it will not confer benefit for "all" critically ill children; however, "all" children deserve well-considered decisions surrounding their ECMO candidacy. The complexity of the decision demands a systematic, "well-reasoned" and "dynamic" approach. Due to clinical urgency, this standard cannot always be met prior to initiation of ECMO. We challenge the paradigm of "candidacy" as a singular decision that must be defined prior to ECMO initiation. Rather, the determination as to whether ECMO is in the patient's best interest is applicable regardless of cannulation status. The priority should be on collaborative, interdisciplinary decision-making processes aligned with principles of transparency, relevant reasoning, accountability, review, and appeal. To ensure a robust process, it should not be temporally constrained by cannulation status. We advocate that this approach will decrease both the risk of not initiating ECMO in a patient who will benefit and the risk of prolonged, nonbeneficial support. We conclude that to ensure fair decisions are made in a patient's best interest, organizations should develop procedurally fair processes for ECMO decision-making that are not tied to a particular time point and are revisited along the management trajectory.

Ethical, Cultural, Social, and Individual Considerations Prior to Transition to Limitation or Withdrawal of Life-Sustaining Therapies.

As part of the invited supplement on Death and Dying in the PICU, we reviewed ethical, cultural, and social considerations for the bedside healthcare practitioner prior to engaging with children and families in decisions about limiting therapies, withholding, or withdrawing therapies in a PICU. Clarifying beliefs and values is a necessary prerequisite to approaching these conversations. Striving for medical consensus is important. Discussion, reflection, and ethical analysis may determine a range of views that may reasonably be respected if professional disagreements persist. Parental decisional support is recommended and should incorporate their information needs, perceptions of medical uncertainty, child's condition, and their role as a parent. Child's involvement in decision making should be considered, but may not be possible. Culturally attuned care requires early examination of cultural perspectives before misunderstandings or disagreements occur. Societal influences may affect expectations and exploration of such may help frame discussions. Hospital readiness for support of social media campaigns is recommended. Consensus with family on goals of care is ideal as it addresses all parties' moral stance and diminishes the risk for superseding one group's value judgments over another. Engaging additional supportive services early can aid with understanding or resolving disagreement. There is wide variation globally in ethical permissibility, cultural, and societal influences that impact the clinician, child, and parents. Thoughtful consideration to these issues when approaching decisions about limitation or withdrawal of life-sustaining therapies will help to reduce emotional, spiritual, and ethical burdens, minimize misunderstanding for all involved, and maximize high-quality care delivery.

Electrographic Seizures in Children and Neonates Undergoing Extracorporeal Membrane Oxygenation.

OBJECTIVE: We aimed to determine the prevalence and risk factors for electrographic seizures in neonates and children requiring extracorporeal membrane oxygenation support. DESIGN: Prospective quality improvement project. SETTING: Quaternary care pediatric institution. PATIENTS: Consistent with American Clinical Neurophysiology Society electroencephalographic monitoring recommendations, neonates and children requiring extracorporeal membrane oxygenation support underwent clinically indicated electroencephalographic monitoring. INTERVENTIONS: We performed a 2-year quality improvement study from July 2013 to June 2015 evaluating electrographic seizure prevalence and risk factors. MAIN RESULTS: Ninety-nine of 112 patients (88%) requiring extracorporeal membrane oxygenation support underwent electroencephalographic monitoring. Electrographic seizures occurred in 18 patients (18%), of whom 11 patients (61%) had electrographic status epilepticus and 15 patients (83%) had exclusively electrographic-only seizures. Electrographic seizures were more common in patients with low cardiac output syndrome (p = 0.03). Patients with electrographic seizures were more likely to die prior to discharge (72% vs 30%; p = 0.01) and have unfavorable outcomes (54% vs 17%; p = 0.004) than those without electrographic seizures. CONCLUSIONS: Electrographic seizures occurred in 18% of neonates and children requiring extracorporeal membrane oxygenation support, often constituted electrographic status epilepticus, and were often electrographic-only thereby requiring electroencephalographic monitoring for identification. Low cardiac output syndrome was associated with an increased risk for electrographic seizures. Electrographic seizures were associated with higher mortality and unfavorable outcomes. Further investigation is needed to determine whether electrographic seizures identification and management improves outcomes.

Outcomes of Single-Ventricle Patients Supported With Extracorporeal Membrane Oxygenation.

OBJECTIVES: Extracorporeal membrane oxygenation is often used in children with single-ventricle anomalies. We aimed to describe extracorporeal membrane oxygenation use in single-ventricle patients to test the hypothesis that despite increasing prevalence, mortality has not improved and overall burden measure by hospital charges and length of stay have increased. DESIGN: Retrospective analysis of the Healthcare Cost and Utilization Project Kids' Inpatient Database was performed with sample weighting to generate national estimates. PATIENTS: Pediatric patients (age ≤ 20) with a diagnosis of single ventricle heart disease requiring extracorporeal membrane oxygenation support from 2000 to 2009. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Seven hundred one children (95% CI, 559-943) with single ventricle were supported with extracorporeal membrane oxygenation in the reporting period. Mortality was 57% and did not improve over time (2000 = 52%, 2003 = 63%, 2006 = 57%, and 2009 = 55%; p = 0.66). Single-ventricle patients who required extracorporeal membrane oxygenation were more likely to have had a cardiac procedure (90% vs 46%; p < 0.001), a diagnosis of arrhythmia (22% vs 13%; p < 0.001), cerebrovascular or neurologic insult (9% vs 1%; p < 0.001), heart failure (24% vs 12%; p < 0.001), acute renal failure (28% vs 3%; p < 0.001), or sepsis (28% vs 8%; p < 0.001). By multivariable analysis, acute renal failure was a risk factor for mortality (adjusted odds ratio, 3.12; 95% CI, 1.95-4.98; p < 0.001). The length of stay for single-ventricle patients with extracorporeal membrane oxygenation increased from 25.2 days in 2000 to 55.6 days in 2009 (p < 0.001). Total inflation-adjusted charges increased from $358,021 (95% CI, $278,658-439,765) in 2000 to $732,349 (95% CI, $671,781-792,917) in 2009 (p < 0.001). CONCLUSIONS: Extracorporeal membrane oxygenation support is uncommon with single-ventricle admissions occurring in 2.3% of all hospitalizations. Among those patients, the mortality rate was 57% with no change over time. Acute renal failure was an independent risk factor for mortality during hospitalization. In addition, length of stay for these patients increased and hospital charges doubled. Further studies are needed to determine suitability and cost-effectiveness of extracorporeal membrane oxygenation in single-ventricle patients.

Direct tracheobronchopexy via left lateral thoracotomy for severe tracheobronchomalacia.

An infant with pulmonary atresia/ventricular septal defect/major aortopulmonary collateral arteries underwent unifocalization, ventriculoseptal defect closure and placement of a right ventricle to pulmonary artery conduit via median sternotomy. Aortopexy and pulmonary arteriopexy via redo sternotomy were insufficient to allow weaning of continuous positive airway pressure and he required direct tracheobronchopexy via left lateral thoracotomy to alleviate posterior trachealis intrusion along the length of the trachea and left main bronchus. He also underwent laryngotracheoplasty with placement of a posterior costal cartilage graft for bilateral vocal cord paralysis. The patient was weaned from positive pressure and discharged in stable condition.

The Burdens of Offering: Ethical and Practical Considerations.

We reflect upon highlights of a facilitated panel discussion from the 2016 Pediatric Cardiac Intensive Care Society Meeting. The session was designed to explore challenges, share practical clinical experiences, and review ethical underpinnings surrounding decisions to offer intensive, invasive therapies to patients who have a poor prognosis for survival or are likely to be burdened with multiple residual comorbidities if survival is achieved. The discussion panel was representative of a variety of disciplines including pediatric cardiology, cardiac intensive care, nursing, and cardiovascular surgery as well as different health-care delivery systems. Key issues discussed included patient's best interests, physician obligations, moral distress, and communication in the context of decisions about providing therapy for patients with a poor prognosis.

Clinical Issues and Controversies in Heart Failure and Transplantation.

Heart failure is a common problem among children admitted in the intensive care unit and is associated with significant morbidity and mortality. As such, the 2014 meeting of the Pediatric Cardiac Intensive Care Society included a session on Clinical Controversies in Heart Failure and Transplantation. This review contains the summaries of the podium presentations of this session and will cover some of the challenging aspects of caring for these patients including medical and mechanical support, fluid overload states, high-risk populations including those after heart transplantation, and end-of-life considerations.

Results of elective repair at 6 months or younger in 277 patients with tetralogy of Fallot: a 14-year experience at a single center.

OBJECTIVE: To report practice and outcomes in infants undergoing elective repair of tetralogy of Fallot. METHODS: A review of a retrospective cohort of elective complete repair of infants age 6 months or younger from 1995 to 2009 was performed. Patients were excluded because of previous interventions, hypercyanotic episodes, intensive care admissions, additional major cardiac defects, or if they were not discharged after birth. Length of stay, mortality, and complications were recorded. Association was determined using logistic or linear regression models and univariate testing determined the multivariate model. RESULTS: There were 277 patients included. The hospital mortality rate was zero. A total of 87.4% of patients were discharged home within 7 days of repair, and 21.6% of patients were discharged on or before the third postoperative day. The postoperative course was uncomplicated in 245 patients (88.4%). Longer support time was associated independently with increased odds of complications (P < .001). Longer support time, younger age, chromosomal abnormality, and presence of a complication were associated independently with a longer hospital stay (all P < .001). Patients younger than 3 months (n = 110) had a longer median hospital stay (4 vs 3 days; P < .001) and longer support times (77.3 ± 35.1 min vs 66.4 ± 34 min; P < .01). CONCLUSIONS: Elective tetralogy of Fallot repair was performed at 6 months or younger with low morbidity, no hospital mortality, and an 11.6% complication rate. Longer support times, lower weight, chromosomal abnormalities, and complications were associated with a significantly increased duration of hospital stay.

Repair of anomalous left coronary artery from pulmonary artery in an infant with respiratory syncytial virus bronchiolitis.

In anomalous left coronary artery from the pulmonary artery (ALCAPA), infants 6 to 12 weeks will often present with symptoms consistent with reflux or bronchiolitis. In those infants diagnosed with both ALCAPA and concomitant active respiratory syncytial virus (RSV) bronchiolitis, others have reported delaying revascularization therapy until resolution of the RSV bronchiolitis. Here, we report the case of a three-month-old infant, diagnosed with ALCAPA and active RSV bronchiolitis, who underwent successful myocardial revascularization within 24 hours of presentation and diagnosis.