"I Didn't Realize How Hard It Was Going to Be Just Transitioning Back into Life": A Qualitative Exploration of Outcomes for Survivors of Pediatric Septic Shock.

Recovery following pediatric critical illness is multifaceted and complex. While most critically ill children survive, many experience morbidities in physical, emotional, cognitive, and social function. We aimed to deeply explore and describe the multidimensional impact of pediatric septic shock for affected children and their families at the granular level using exploratory qualitative methodology. We performed semistructured telephone interviews of adolescents and caregivers of children admitted with community-acquired septic shock to two tertiary pediatric intensive care units in the United States. Interviews were conducted within two years of hospital admission, and were recorded, transcribed, and analyzed using thematic analysis. Two adolescents and 10 caregivers were interviewed. Participants described meaningful and long-lasting outcomes of septic shock on multiple dimensions of their lives. The adolescents and caregivers described substantial negative consequences on physical health and function which resulted in increased medical complexity and heightened caregiver vigilance. The physical impact led to substantial psychosocial consequences for both the child and family, including social isolation. Most caregivers expressed that septic shock was transformational in their lives, with some caregivers describing posttraumatic growth. This preliminary study provides a novel, granular view of the multidimensional impact of septic shock in pediatric patients and their families. Exploring these experiences through qualitative methodology provides greater insight into important patient and family outcomes. Deeper understanding of these outcomes may support the development of meaningful interventions to improve quality of life for children and their families following critical illness.

Navigating parental requests: considering the relational potential standard in paediatric end-of-life care in the paediatric intensive care unit.

Families and clinicians approaching a child's death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is in the child's best interest, finding an optimal balance of benefit over harm, and sometimes addressing potential futility and moral distress. The best interest standard (BIS) is often marshalled by clinicians to help navigate these dilemmas and focuses on a clinician's primary ethical duty to the paediatric patient. This approach does not consider a clinician's potential duty to the patient's family. This paper argues that when a child is dying in the PICU, the physician has a duty to serve both the patient and the family, and that in some circumstances, the duty to serve the family becomes as important as that owed to the child. We detail the limitations of the BIS in paediatric EOL care and propose the relational potential standard as an additional ethical framework to guide our decisions.

An ethical analysis of obesity as a contraindication to pediatric liver transplant candidacy.

Childhood obesity is becoming more prevalent in the United States (US) and worldwide, including among children in need of a liver transplant. Unlike with heart and kidney failure, end-stage liver disease (ESLD) is unique in that no widely available medical technology can re-create the life-sustaining function of a failing liver. Therefore, delaying a life-saving liver transplant for weight loss, for example, is much harder, if not impossible for many pediatric patients, especially those with acute liver failure. For adults in the United States, guidelines consider obesity a contraindication to liver transplant. Although formal guidelines are lacking in children, many pediatric transplant centers also consider obesity a contraindication to a pediatric liver transplant. Variations in practice among pediatric institutions may result in biased and ad hoc decisions that worsen healthcare inequities. In this article, we define and report the prevalence of childhood obesity among children with ESLD, review existing guidelines for liver transplant in adults with obesity, examine pediatric liver transplant outcomes, and discuss the ethical considerations of using obesity as a contraindication to pediatric liver transplant informed by the principles of utility, justice, and respect for persons.

Validation of a Process for Shared Decision-Making in Pediatrics.

OBJECTIVE: We sought to confirm, refute, or modify a 4-step process for implementing shared decision-making (SDM) in pediatrics that involves determining 1) if the decision includes >1 medically reasonable option; 2) if one option has a favorable medical benefit-burden ratio compared to other options; and 3) parents' preferences regarding the options; then 4) calibrating the SDM approach based on other relevant decision characteristics. METHODS: We videotaped a purposive sample of pediatric inpatient and outpatient encounters at a single US children's hospital. Clinicians from 7 clinical services (craniofacial, neonatology, oncology, pulmonary, pediatric intensive care, hospital medicine, and sports medicine) were eligible. English-speaking parents of children who participated in inpatient family care conferences or outpatient problem-oriented encounters with participating clinicians were eligible. We conducted individual postencounter interviews with clinician and parent participants utilizing video-stimulated recall to facilitate reflection of decision-making that occurred during the encounter. We utilized direct content analysis with open coding of interview transcripts to determine the salience of the 4-step SDM process and identify themes that confirmed, refuted, or modified this process. RESULTS: We videotaped 30 encounters and conducted 53 interviews. We found that clinicians' and parents' experiences of decision-making confirmed each SDM step. However, there was variation in the interpretation of each step and a need for flexibility in implementing the process depending on specific decisional contexts. CONCLUSIONS: The 4-step SDM process for pediatrics appears to be salient and may benefit from further guidance about the interpretation of each step and contextual factors that support a modified approach.

An ethical analysis of obesity as a contraindication of pediatric kidney transplant candidacy.

The inclusion of body mass index (BMI) as a criterion for determining kidney transplant candidacy in children raises clinical and ethical challenges. Childhood obesity is on the rise and common among children with kidney failure. In addition, obesity is reported as an independent risk factor for the development of CKD and kidney failure. Resultantly, more children with obesity are anticipated to need kidney transplants. Most transplant centers around the world use high BMI as a relative or absolute contraindication for kidney transplant. However, use of obesity as a relative or absolute contraindication for pediatric kidney transplant is controversial. Empirical data demonstrating poorer outcomes following kidney transplant in obese pediatric patients are limited. In addition, pediatric obesity is distributed inequitably among groups. Unlike adults, most children lack independent agency to choose their food sources and exercise opportunities; they are dependent on their families for these choices. In this paper, we define childhood obesity and review (1) the association and impact of obesity on kidney disease and kidney transplant, (2) existing adult guidelines and rationale for using high BMI as a criterion for kidney transplant, (3) the prevalence of childhood obesity among children with kidney failure, and (4) the existing literature on obesity and pediatric kidney transplant outcomes. We then discuss ethical considerations related to the use of obesity as a criterion for kidney transplant.

SARS-CoV-2 RNA positive pediatric organ donors: A case report.

BACKGROUND: Preliminary evidence suggests that non-lung organ donation from resolved, asymptomatic or mildly symptomatic SARS-CoV-2 infected adults may be safe. However, several biological aspects of SARS-CoV-2 infection differ in children and the risk for transmission and outcomes of recipients from pediatric donors with SARS-CoV-2 infection are not well described. METHODS: We report two unvaccinated asymptomatic pediatric non-lung organ deceased donors who tested positive for SARS-CoV-2 RNA by RT-PCR. Donor One unexpectedly had SARS-CoV-2 RNA detected in nasopharyngeal swab and plasma specimens at autopsy despite several negative tests (upper and lower respiratory tract) in the days prior to organ recovery. Donor Two had SARS-CoV- 2 RNA detected in multiple nasopharyngeal swabs but not lower respiratory tract specimens (endotracheal aspirate and bronchoalveolar lavage) during routine surveillance prior to organ recovery and was managed with remdesivir and monoclonal antibodies prior to organ recovery. RESULTS: Two hearts, two livers and four kidneys were successfully transplanted into seven recipients. No donor to recipient transmission of SARS-CoV-2 was observed and graft function of all organs has remained excellent for up to 7 months of followup. CONCLUSIONS: Due to the persistent gap between organ availability and the number of children waiting for transplants, deceased pediatric patients with non-disseminated SARS-CoV-2 infection, isolated to upper and/or lower respiratory tract, should be considered as potential non-lung organ donors.

Parental Refusals of Blood Transfusions from COVID-19 Vaccinated Donors for Children Needing Cardiac Surgery.

There is a growing trend of refusal of blood transfusions from COVID-19 vaccinated donors. We highlight three cases where parents have refused blood transfusions from COVID-19 vaccinated donors on behalf of their children in the setting of congenital cardiac surgery. These families have also requested accommodations such as explicit identification of blood from COVID-19 vaccinated donors, directed donation from a COVID-19 unvaccinated family member, or use of a non-standard blood supplier. We address the ethical challenges posed by these issues. We describe the current screening and safety processes for standard blood donation and explore the importance of donor anonymity and challenges with directed donation and non-standard blood suppliers. We present an ethical framework using the Best Interest Standard, the Zone of Parental Discretion, and the Harm Principle when considering these refusals. Finally, we provide recommendations for how to approach these requests as they potentially become more commonplace in pediatrics.

Pediatric Shared Decision-Making for Simple and Complex Decisions: Findings From a Delphi Panel.

OBJECTIVE: To develop recommendations for pediatric shared decision-making (SDM). METHODS: We conducted a Delphi method study from 2020 to 2021 with an international panel (n = 21) of clinicians, researchers, and parents with expertise in pediatric SDM. We conducted semistructured interviews to identify the key processes of pediatric SDM. We coded the interviews using content analysis and developed a questionnaire on the potential processes of pediatric SDM. Using a Likert scale, panelists evaluated each process twice, once for simple decisions and once for complex decisions. Panelists were provided with a summary of the results and evaluated each process again. The processes that were agreed on for simple and complex decisions were reported as "fundamental processes." The processes that were agreed on for complex decisions were reported as "additional processes." RESULTS: A total of 79 recommendations were developed, including 29 fundamental processes and 14 additional processes for complex decisions. A recurring theme was the importance of personalizing the decision-making process. For example, the panel recommended that physicians should assess the family and child's desired roles in the decision-making process, assess their desired level of directiveness, and elicit and clarify their values, preferences, and goals. The panel also disagreed on several subprocesses, such as how to determine the child's role and the appropriate level of directiveness. CONCLUSIONS: An international expert panel developed recommendations for pediatric SDM for both simple and complex decisions. The recommendations highlight the importance of personalizing the decision-making process.

Ethical Considerations in Ever-Expanding Utilization of ECLS: A Research Agenda.

Technological advancements and rapid expansion in the clinical use of extracorporeal life support (ECLS) across all age ranges in the last decade, including during the COVID-19 pandemic, has led to important ethical considerations. As a costly and resource intensive therapy, ECLS is used emergently under high stakes circumstances where there is often prognostic uncertainty and risk for serious complications. To develop a research agenda to further characterize and address these ethical dilemmas, a working group of specialists in ECLS, critical care, cardiothoracic surgery, palliative care, and bioethics convened at a single pediatric academic institution over the course of 18 months. Using an iterative consensus process, research questions were selected based on: (1) frequency, (2) uniqueness to ECLS, (3) urgency, (4) feasibility to study, and (5) potential to improve patient care. Questions were categorized into broad domains of societal decision-making, bedside decision-making, patient and family communication, medical team dynamics, and research design and implementation. A deeper exploration of these ethical dilemmas through formalized research and deliberation may improve equitable access and quality of ECLS-related medical care.

Family-Assisted Severity of Illness Monitoring for Hospitalized Children in Low-Resource Settings-A Two-Arm Interventional Feasibility Study.

Introduction: Pediatric mortality remains unacceptably high in many low-resource settings, with inpatient deaths often associated with delayed recognition of clinical deterioration. The Family-Assisted Severe Febrile Illness ThERapy (FASTER) tool has been developed for caregivers to assist in monitoring their hospitalized children and alert clinicians. This study evaluates feasibility of implementation by caregivers and clinicians. Methods: Randomized controlled feasibility study at Kenyatta National Hospital, Kenya. Children hospitalized with acute febrile illness with caregivers at the bedside for 24 h were enrolled. Caregivers were trained using the FASTER tool. The primary outcome was the frequency of clinician reassessments between intervention (FASTER) and standard care arms. Poisson regression with random intercept for grouping by patient was used, adjusting for admission pediatric early warning score, age, gender. Secondary outcomes included survey assessments of clinician and caregiver experiences with FASTER. Results: One hundred and fifty patient/caregiver pairs were enrolled, 139 included in the analysis, 74 in the intervention, 65 in the control arm. Patients' median age was 0.9 (range 0.2-10) and 1.1 years (range 0.2-12) in intervention vs. control arms. The most common diagnoses were pneumonia (80[58%]), meningitis (58[38%]) and malaria (34 [24%]). 134 (96%) caregivers were patients' mothers. Clinician visits/hour increased with patients' illness severity in both arms, but without difference in frequency between arms (point estimate for difference -0.9%, p = 0.97). Of the 16 deaths, 8 (four/arm) occurred within 2 days of enrollment. Forty clinicians were surveyed, 33 (82%) reporting that FASTER could improve outcomes of very sick children in low-resource settings; 26 (65%) rating caregivers as able to adequately capture patients' severity of illness. Of 70 caregivers surveyed, 63 (90%) reported that FASTER training was easy to understand; all (100%) agreed that the intervention would improve care of hospitalized children and help identify sick children in their community. Discussion: We observed no difference in recorded frequency of clinician visits with FASTER monitoring. However, the tool was rated positively by caregivers and clinicians., Implementation appears feasible but requires optimization. These feasibility data may inform a larger trial powered to measure morbidity and mortality outcomes to determine the utility of FASTER in detecting and responding to clinical deterioration in low-resource settings. Clinical Trial Registration: ClinicalTrials.gov, identifier: NCT03513861.

A world away and here at home: a prioritisation framework for US international patient programmes.

Programmes serving international patients are increasingly common throughout the USA. These programmes aim to expand access to resources and clinical expertise not readily available in the requesting patients' home country. However, they exist within the US healthcare system where domestic healthcare needs are unmet for many children. Focusing our analysis on US children's hospitals that have a societal mandate to provide medical care to a defined geographic population while simultaneously offering highly specialised healthcare services for the general population, we assume that, given their mandate, priority will be given to patients within their catchment area over other patients. We argue that beyond prioritising patients within their region and addressing inequities within US healthcare, US institutions should also provide care to children from countries where access to vital medical services is unavailable or deficient. In the paper, we raise and attempt to answer the following: (1) Do paediatric healthcare institutions have a duty to care for all children in need irrespective of their place of residence, including international patients? (2) If there is such a duty, how should this general duty be balanced against the special duty to serve children within a defined geographical area to which an institution is committed, when resources are strained? (3) Finally, how are institutional obligations manifest in paradigm cases involving international patients? We start with cases, evaluating clinical and contextual features as they inform the strength of ethical claim and priority for access. We then proceed to develop a general prioritisation framework based on them.

Health-related quality of life outcome measures for children surviving critical care: a scoping review.

PURPOSE: Health-related quality of life (HRQL) has been identified as one of the core outcomes most important to assess following pediatric critical care, yet there are no data on the use of HRQL in pediatric critical care research. We aimed to determine the HRQL instruments most commonly used to assess children surviving critical care and describe study methodology, patient populations, and instrument characteristics to identify areas of deficiency and guide investigators conducting HRQL research. METHODS: We queried PubMed, EMBASE, PsycINFO, Cumulative Index of Nursing and Allied Health Literature, and the Cochrane Registry for studies evaluating pediatric critical care survivors published 1970-2017. We used dual review for article selection and data extraction. RESULTS: Of 60,349 citations, 66 articles met inclusion criteria. The majority of studies were observational (89.4%) and assessed HRQL at one post-discharge time-point (86.4%), and only 10.6% of studies included a baseline assessment. Time to the first follow-up assessment ranged from 1 month to 10 years post-hospitalization (median 3 years, IQR 0.5-6). For 26 prospective studies, the median follow-up time was 0.5 years [IQR 0.25-1]. Parent/guardian proxy-reporting was used in 83.3% of studies. Fifteen HRQL instruments were employed, with four used in >5% of articles: the Health Utility Index (n = 22 articles), the Pediatric Quality of Life Inventory (n = 17), the Child Health Questionnaire (n = 16), and the 36-Item Short Form Survey (n = 9). CONCLUSION: HRQL assessment in pediatric critical care research has been centered around four instruments, though existing literature is limited by minimal longitudinal follow-up and infrequent assessment of baseline HRQL.

Pediatric Death by Neurologic Criteria: The Ever-Changing Landscape and the Expanding Role of Palliative Care Professionals.

Pediatric palliative care providers are especially suited to support families and medical teams facing a potential diagnosis of brain death, or death by neurologic criteria (DNC), when a child suffers a devastating brain injury. To support pediatric palliative care providers' effectiveness in this role, this article elucidates the clinical determination of DNC and the evolution of the ethical and legal controversies surrounding DNC. Conceptual definitions of death used in the context of DNC have been and continue to be debated amongst academicians, and children's families often have their own concept of death. Increasingly, families have brought legal cases challenging the definition of death, arguing for a right to refuse examination to diagnose DNC, and/or voicing religious objections. We describe these conceptual definitions and legal challenges then explore some potential reasons why families may dispute a determination of DNC. We conclude that working with patients, families, and healthcare providers facing DNC carries inherent and unique challenges suited to intervention by interdisciplinary palliative care teams.

Can a Parent Refuse the Brain Death Examination?

The American Academy of Neurology believes that doctors have the right to do tests to evaluate whether a patient is brain dead even if the family does not consent. They argue that physicians have "both the moral authority and professional responsibility" to do such evaluations, just as they have the authority and responsibility to declare someone dead by circulatory criteria. Not everyone agrees. Truog and Tasker argue that apnea testing to confirm brain death has risks and that, for some families, those risks may outweigh the benefits. So, what should doctors do when caring for a patient whom they believe to be brain dead but whose parents refuse to allow testing to confirm that the patient meets neurologic criteria for death? In this article, we analyze the issues that arise when parents refuse such testing.

ECLS for Legionella: All Ages Welcome in the ELSO Registry.

We describe the use of extracorporeal life support (ECLS) for Legionellosis in the pediatric and adult populations and report complications, morbidity, and mortality by conducting a retrospective review of patients from the Extracorporeal Life Support Organization registry, including two cases at our pediatric institution. A total of 194 patients with ECLS for Legionella pneumophila infection who received ECLS were included in the analysis. Overall survival was 71%. Lower body weight and VA ECLS were associated with lower survival. ECLS complications including central nervous system (CNS) hemorrhage, cardiopulmonary resuscitation, pulmonary infection, and documented infections were rare but more common among nonsurvivors. Mortality in children (64%) was significantly higher than for adults (27%, p = 0.015). Infants fared very poorly with a mortality of 88%. As demonstrated, ECLS can successfully support patients with severe respiratory failure caused by L. pneumophila infection. Consideration should be given to its use in high-risk pediatric patients with severe acute hypoxemic respiratory failure of unclear etiology. ECLS is a beneficial tool for appropriate candidates with rare disease. Pulmonary respite may provide time for diagnosis and lung recuperation.

"We Can Do Anything but We Can't Do Everything": Exploring the Perceived Impact of International Pediatric Programs on U.S. PICUs.

Purpose: Every year, an increasing number of international patients seek medical care in the United States (U.S.), yet little is known about their impact. Based on single institution experiences, we wanted to explore the perceived impact of international pediatric patients on large academic U.S. pediatric intensive care units (PICUs), as they are already taxed systems. Methods: To explore current perceptions, seven geographically diverse institutions who advertise care for international patients on their websites and have ≥24 PICU beds were identified after IRB approval was obtained. We consented and interviewed PICU division chiefs or medical directors from each institution regarding their demographics and international patients. Common themes were identified. Results: Participating institutions were diverse in geographic location, census, and resource allocation strategies. Five of the seven institutions reported the presence of a formal international patient program. Four of those five reported an increase in international patients receiving PICU care over the past 5 years. International patients sought complex surgeries, advanced cancer treatments and metabolic/genetic evaluations. We identified three primary domains that require further exploration and research: (1) cultural and language differences leading to barriers in providing optimal care to international patients (2) institutional financial considerations, and (3) perceived positive and negative impact on the care of local/domestic patient populations. Conclusions: The presence of international programs raises a number of important ethical questions, including whether clinicians have a greater duty to serve residents of the local community as opposed to international patients when resources are limited. Further exploration is warranted.

Gaps in the Implementation of Shared Decision-making: Illustrative Cases.

Shared decision-making (SDM) has emerged as the preferred decision-making model in the clinician-patient relationship. Through collaboration, SDM helps to facilitate evidence-based medical decisions that are closely aligned with patient or surrogate preferences, values, and goals. How to implement SDM in clinical pediatric practice, however, remains elusive, in part because SDM in pediatrics is complicated by the involvement of parents as a special class of surrogate decision-maker. A provisional framework for the process of SDM in pediatrics was recently proposed by Opel to help facilitate its implementation. To identify aspects of the framework that require refinement, we applied it across a diverse range of clinical cases from multiple pediatric specialties. In doing so, several questions surfaced that deserve further scrutiny: (1) For which medical decisions is consideration of SDM required? (2) What is considered medically reasonable when there is variability in standard practice? (3) Can an option that is not consistent with standard practice still be medically reasonable? (4) How should public health implications be factored into SDM? (5) How should variability in preference sensitivity be approached? (6) How should the developing autonomy of adolescents be integrated into SDM?; and (7) How should SDM address parental decisional burden for emotionally charged decisions? We conduct a brief analysis of each question raised to illustrate key areas for future research.

Titrating Clinician Directiveness in Serious Pediatric Illness.

Shared decision-making in pediatrics is based on a trusting partnership between parents, clinicians, and sometimes patients, wherein all stakeholders explore values and weigh options. Within that framework, clinicians often have an obligation to provide guidance. We describe a range of ethically justifiable clinician directiveness that could be appropriate in helping families navigate serious pediatric illness. The presentation of "default" options and informed nondissent as potential strategies are discussed. The degree of clinician directiveness may vary even for decisions that are equally "shared." A myriad of factors affect how directive a clinician can or should be. Some of the most important factors are the degree of prognostic certainty and the family's desire for guidance, but others are important as well, such as the urgency of the decision; the relationship between the clinician, patient, and family; the degree of team consensus; and the burdens and benefits of therapy. Directiveness should be considered an important tool in a clinician's armamentarium and is one that can be used to support families in stressful and emotionally difficult situations.

When a Child Dies in the PICU Despite Ongoing Life Support.

OBJECTIVES: To examine the circumstance of death in the PICU in the setting of ongoing curative or life-prolonging goals. DATA SOURCES: Multidisciplinary author group, international expert opinion, and use of current literature. DATA SYNTHESIS: We describe three common clinical scenarios when curative or life-prolonging goals of care are pursued despite a high likelihood of death. We explore the challenges to providing high-quality end-of-life care in this setting. We describe possible perspectives of families and ICU clinicians facing these circumstances to aid in our understanding of these complex deaths. Finally, we offer suggestions of how PICU clinicians might improve the care of children at the end of life in this setting. CONCLUSIONS: Merging curative interventions and optimal end-of-life care is possible, important, and can be enabled when clinicians use creativity, explore possibilities, remain open minded, and maintain flexibility in the provision of critical care medicine. When faced with real and perceived barriers in providing optimal end-of-life care, particularly when curative goals of care are prioritized despite a very poor prognosis, tensions and conflict may arise. Through an intentional exploration of self and others' perspectives, values, and goals, and working toward finding commonality in order to align with each other, conflict in end-of-life care may lessen, allowing the central focus to remain on providing optimal support for the dying child and their family.