Continuity Strategies for Long-Stay PICU Patients: Consensus Statements From the Lucile Packard Foundation PICU Continuity Panel.

Objectives: To develop consensus statements on continuity strategies using primary intensivists, primary nurses, and recurring multidisciplinary team meetings for long-stay patients (LSPs) in PICUs.

Participants: The multidisciplinary Lucile Packard Foundation PICU Continuity Panel comprising parents of children who had prolonged PICU stays and experts in several specialties/professions that care for children with medical complexity in and out of PICUs.

Design/methods: We used modified RAND Delphi methodology, with a comprehensive literature review, Delphi surveys, and a conference, to reach consensus.

Disability or Death: A Focused Review of Informed Consent in Pediatric Neurosurgery.

The management of pediatric neurosurgical disease often requires families to choose between long-term disability and premature death. This decision-making is codified by informed consent. In practice, decision-making is heavily weighted toward intervening to prevent death, often with less consideration of the realities of long-term disability.

Exploring Ethical Dimensions of Physician Involvement in Requests for Organ Donation in Pediatric Brain Death.

Pediatric organ transplantation remains a life-saving therapy, with donated organs being absolutely scarce resources. Efforts to both increase pediatric organ donation authorization by families of children declared dead by neurologic criteria and mitigate perception of conflicts of interest have resulted in frequent exclusion of physicians from this process. This article provides of focused review of pediatric organ donation in the setting of brain death, explores the breadth of consequences of physician exclusion in donation authorization requests, and provides an ethical framework defending physician involvement in the organ donation process for this patient population.

Group Concept Mapping Conceptualizes High-Quality Care for Long-Stay Pediatric Intensive Care Unit Patients and Families.

Objective: To describe and conceptualize high-quality care for long-stay pediatric intensive care unit (PICU) patients using group concept mapping (GCM).

Study Design: We convened an expert panel to elucidate domains of high-quality care for this growing patient population for which transitory care models fail to meet their needs. Thirty-one healthcare professionals and 7 parents of patients with previous prolonged PICU hospitalizations comprised a diverse, interprofessional multidisciplinary panel.

Sexuality Among Adolescents With Intellectual Disability: Balancing Autonomy and Protection.

Adolescents and young adults living with intellectual disability (ID) have made significant advancements integrating into multiple aspects of western society, but there has been less progress with regards to sexual health. While advocating for individuals with ID to live life to the fullest, pediatricians have practical concerns regarding the ability to consent to sex as well as avoid coercion and manipulation in sexual encounters. This has led to tension between supporting the autonomy of a patient with ID while protecting them from harm.

Predictors of Failure of Noninvasive Ventilation in Critically Ill Children.

Noninvasive ventilation (NIV) is a common modality employed to treat acute respiratory failure. Most data guiding its use is extrapolated from adult studies. We sought to identify clinical predictors associated with failure of NIV, defined as requiring intubation.

Posterior Reversible Encephalopathy Syndrome: Incidence and Clinical Characteristics in Children With Cancer.

The etiology and outcomes of posterior reversible encephalopathy syndrome (PRES) in children with cancer are not well understood. We aim to determine the incidence of PRES, describe associated morbidity and mortality, and better understand risk factors in this patient population. A total of 473 children with a hematologic malignancy or postallogeneic hematopoietic cell transplantation between June 2015 and June 2020 were screened for PRES to determine incidence and whether age or underlying diagnosis are associated with development of PRES.

What Do Patients and Parents Say About Parents' Ability to Choose Early Genital Surgery for Girls with Congenital Adrenal Hyperplasia?

Purpose: We assessed opinions of females with congenital adrenal hyperplasia and their parents about the parent's ability to choose early genital surgery for these patients.

Materials And Methods: We conducted an online survey of females with congenital adrenal hyperplasia (46XX,16+ years old) and independently recruited parents (2019-2020) diagnosed in first year of life in the United States. A multidisciplinary medical team, women with congenital adrenal hyperplasia and parents drafted the survey.

Development and Retrospective Review of a Pediatric Ethics Consultation Service at a Large Academic Center.

The primary objective was to review pediatric ethics consultations (PECs) at a large academic health center over a nine year period, assessing demographics, ethical issues, and consultant intervention. The secondary objective was to describe the evolution of PECs at our institution. This was a retrospective review of Consultation Summary Sheets compiled for PECs at our Academic Health Center between January 2008 and April 2017.

Thiamine Deficiency Leading to Refractory Lactic Acidosis in a Pediatric Patient.

Thiamine plays a critical role in energy metabolism. Critically ill children and adults may develop thiamine deficiency with ultimately increased mortality due to potentially irreversible consequences of severe type B lactic acidosis. We report a case of an unvaccinated term neonate with malignant pertussis requiring extracorporeal membrane oxygenation and continuous renal replacement therapy, who developed profound lactic acidosis of unknown etiology.

Prospective Evaluation of Physical Contact with Critically Ill Child on Caregiver Spiritual Wellbeing.

Objectives: To evaluate whether a pediatric intensive care unit initiative promoting physical contact between caregiver and patient improves caregiver spiritual wellbeing. The secondary objectives were to evaluate caregiver perceptions of care before and after the initiative and to follow unplanned extubation rate as a marker of safety of the initiative. We hypothesized that caregiver spiritual wellbeing and caregiver perceptions of care would improve with implementation of our physical contact initiative known as Project ROSE (Reach Out, Soothe, and Embrace).

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.

Futility Disputes: A Review of the Literature and Proposed Model for Dispute Navigation Through Trust Building.

Futility disputes in the intensive care unit setting have received significant attention in the literature over the past several years. Although the idea of improving communication in an attempt to resolve these challenging situations has been regularly discussed, the concept and role of trust building as the means by which communication improves and disputes are best navigated is largely absent. We take this opportunity to review the current literature on futility disputes and argue the important role of broken trust in these encounters, highlighting current evidence establishing the necessity and utility of trust in both medical decision-making and effective communication.