Ethical Challenges in Pediatric Medical Complexity: A Survey of Parents.

Objective: To understand parents' experiences of ethical challenges in the care of children with chronic and serious medical conditions and what resources they access for support.

Study Design: We recruited English-speaking parents of children with complex and serious medical conditions via family advocacy groups to complete an electronic survey from October 2022 through February 2023. We queried respondents' experiences with specific ethical challenges in the care of their child, whether their concerns persisted, and what resources they accessed.

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.

Primary Intensivists and Nurses for Long-Stay Patients: A Survey of Practices and Perceptions at Academic PICUs.

Objectives: To determine the prevalence of the utilization of primary intensivists and primary nurses for long-stay patients in large, academic PICU and ascertain how these practices are operationalized and perceived.

Design: A cross-sectional survey.

Setting: U.

Bioethics for Neonatal Cardiac Care.

Background: Clinicians caring for neonates with congenital heart disease encounter challenges with ethical implications in daily practice and must have some basic fluency in ethical principles and practical applications.

Methods: Good ethical practice begins with a thorough understanding of the details and narrative of each individual case, examination via classic principles of bioethics, and further framing of that translation into practice.

Results: We explore some of these issues and expand awareness through the lens of a case presentation beginning with fetal considerations through end-of-life discussions.

Addressing Racism in the Healthcare Encounter: The Role of Clinical Ethics Consultants.

Clinical ethicists move in different environments and interface with a variety of stakeholders, and are therefore uniquely positioned to answer the call for equity and anti-racism. We describe why a clinical ethicist should contribute to anti-racism efforts and describe general approaches for addressing racism across institutional contexts, including: (1) addressing racism as bedside clinical ethics consultant, (2) addressing wider lens of anti-racism work across multiple ethics consults over time, and (3) addressing racism at the organizational level.

Prognostic and Goals-of-Care Communication in the PICU: A Systematic Review.

Objective: Admission to the PICU may result in substantial short- and long-term morbidity for survivors and their families. Engaging caregivers in discussion of prognosis is challenging for PICU clinicians. We sought to summarize the literature on prognostic, goals-of-care conversations (PGOCCs) in the PICU in order to establish current evidence-based practice, highlight knowledge gaps, and identify future directions.

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.

Disposition Decisions in Cases of Medical Complexity and Health Inequity.

The question of optimal disposition for children with complex medical and social circumstances has long challenged the well-intentioned clinician. The coronavirus disease 2019 pandemic created unique difficulties for patients, families, and health care providers, in addition to highlighting long-standing racial and socioeconomic inequities in health care. In pediatric hospitals, necessary public health measures such as visitor restrictions shifted many shared decision-making processes such as discharge planning from complicated to impossible.

The Impact of a Pediatric Continuity Care Intensivist Program on Patient and Parent Outcomes: An Unblinded Randomized Controlled Trial.

 We studied the impact of a standardized continuity care intensivists (CCIs) program on patient and family outcomes for long-stay patients in the pediatric intensive care unit (PICU), also assessing the intervention's acceptability and feasibility.  A patient-level, unblinded randomized-controlled trial in a PICU at a large children's hospital. Participants included: (1) patients with ≥ 7 days PICU admission and likely to stay another 7 days; (2) their parents; (3) PICU attendings participating as continuity attendings; and (4) PICU attendings providing usual care (UC).

Top Ten Tips Palliative Care Clinicians Should Know About Their Work's Intersection with Clinical Ethics.

Palliative care (PC) subspecialists and clinical ethics consultants often engage in parallel work, as both function primarily as interprofessional consultancy services called upon in complex clinical scenarios and challenging circumstances. Both practices utilize active listening, goals-based communication, conflict mediation or mitigation, and values explorations as care modalities. In this set of tips created by an interprofessional team of ethicists, intensivists, a surgeon, an attorney, and pediatric and adult PC nurses and physicians, we aim to describe some paradigmatic clinical challenges for which partnership may improve collaborative, comprehensive care.

A Snapshot of Chronic Critical Illness in Pediatric Intensive Care Units.

Children with chronic critical illness (CCI) represent the sickest subgroup of children with medical complexity. In this article, we applied a proposed definition of pediatric CCI to assess point prevalence in medical, cardiovascular, and combined pediatric intensive care units (PICUs), screening all patients admitted to six academic medical centers in the United States on May 17, 2017, for pediatric CCI (PCCI) eligibility. We gathered descriptive data to understand medical complexity and resource needs of children with PCCI in PICUs including data regarding hospitalization characteristics, previous admissions, medical technology, and chronic multiorgan dysfunction.

Trust in Physicians, Anxiety and Depression, and Decision-Making Preferences among Parents of Children with Serious Illness.

To assess parental decision-making preferences when caring for a child with serious illness and to evaluate for an association between preferences and parental trust in physicians, and potential modification of this association by parental anxiety or depression. We analyzed cross-sectional data from 200 parents of 158 children in the United States who had life-threatening illnesses and whose attending physicians thought that the parents would have to make major medical decision in the next 12 to 24 months. Parents completed measures of decision-making preferences, trust in physicians, anxiety, and depression.

The Changing Landscape in Pediatric Hospitals: A Multicenter Study of How Pediatric Chronic Critical Illness Impacts NICU Throughput.

Objective: Pediatric inpatient bed availability is increasingly constrained by the prolonged hospitalizations of children with medical complexity. The sickest of these patients are chronic critically ill and often have protracted intensive care unit (ICU) stays. Numbers and characteristics of infants with chronic critical illness are unclear, which undermines resource planning in ICU's and general pediatric wards.

The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review.

The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. Pediatric palliative care requires research to mature the science and improve interventions. A tension exists between the desire to enhance palliative and end-of-life care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens.

Massive Ovarian Growth in a Woman With Severe Insulin-Resistant Polycystic Ovary Syndrome Receiving GnRH Analogue.

Context: Ovarian hyperandrogenism from polycystic ovary syndrome (PCOS) and hyperinsulinemia from insulin resistance are modulators of ovarian follicle development. We report on a woman with PCOS and hyperandrogenism and severe insulin resistance from metabolic syndrome who received long-term GnRH analogue therapy preceding bilateral salpingo-oophorectomy for massive ovarian enlargement. Ovarian histological examination showed proliferating granulosa cells within antral follicles coexistent with serous cystadenofibromas, demonstrating a unique link between hyperinsulinemia and granulosa cell mitogenesis.

Pediatric continuity care intensivist: A randomized controlled trial.

Introduction: Long-stay critically ill patients in the Pediatric Intensive Care Unit (PICU) may be at risk for inconsistencies in treatment plan, delay in plan progression, and patient/family dissatisfaction with communication. This article describes the development and evaluation of an intervention designed to improve continuity and communication delivered by continuity PICU attendings.

Methods And Analysis: A randomized controlled trial of an intervention in one PICU that was randomized at the patient level.

Supporting Family Decision-making for a Child Who Is Seriously Ill: Creating Synchrony and Connection.

The families of children with chronic or serious illness are sometimes faced with difficult decisions never previously imagined. We offer a stepwise approach in building a human connection with these families to support them through the decision-making process. We encourage the clinician to stop talking and to actively listen and find common ground.

Communication training for inter-specialty clinicians.

Background: Inter-specialty clinicians often co-lead family conferences for hospitalised patients. Families frequently report receiving different messages from different clinicians. We developed a communication training workshop that crosses disciplines and co-trains clinicians in one setting to create a culture of delivering a unified message.