Pediatric Palliative Care in a Pandemic: Role Obligations, Moral Distress, and the Care You Can Give
Many ethical issues arise concerning the care of critically ill and dying patients during the coronavirus disease 2019 (COVID-19) pandemic. In this issue’s Ethics Rounds, we present 2 cases that highlight 2 different sorts of ethical issues. One is focused on the decisions that have to be made when the surge of patients with respiratory failure overwhelm ICUs. The other is focused on the psychological issues that arise for parents who are caring for a dying child when infection-control policies limit the number of visitors. Both of these situations raise challenges for caregivers who are trying to be honest, to deal with their own moral distress, and to provide compassionate palliative care.
The coronavirus disease 2019 pandemic has affected nearly every aspect of medicine and raises numerous moral dilemmas for clinicians. Foremost of these quandaries is how to delineate and implement crisis standards of care and, specifically, how to consider how health care resources should be distributed in times of shortage. We review basic principles of disaster planning and resource stewardship with ethical relevance for this and future public health crises, explore the role of illness severity scoring systems and their limitations and potential contribution to health disparities, and consider the role for exceptionally resource-intensive interventions. We also review the philosophical and practical underpinnings of crisis standards of care and describe historical approaches to scarce resource allocation to offer analysis and guidance for pediatric clinicians. Particular attention is given to the impact on children of this endeavor. Although few children have required hospitalization for symptomatic infection, children nonetheless have the potential to be profoundly affected by the strain on the health care system imposed by the pandemic and should be considered prospectively in resource allocation frameworks.
The novel severe acute respiratory syndrome coronavirus 2 is a worldwide pandemic. The severe morbidity and mortality associated with coronavirus disease 2019 has mostly affected the elderly or those with underlying medical conditions. We present a case of a 12-year-old girl with no past medical history who presented with fever, cough, and vomiting. Laboratory evaluation revealed severe thrombocytopenia and elevated markers of inflammation. The patient progressed to respiratory failure, and testing results for the severe acute respiratory syndrome coronavirus 2 returned positive. Because of the severity of her thrombocytopenia, she was treated with intravenous immunoglobulin and steroids with prompt improvement in platelets. The patient’s severe acute respiratory distress syndrome was managed with mechanical ventilation, inhaled nitric oxide, and then airway pressure release ventilation. After azithromycin and hydroxychloroquine were given without improvement, our patient received tocilizumab, an anti–interleukin-6 receptor antibody, and remdesivir, a broad antiviral agent, with significant clinical benefit soon afterward. Given that severe pediatric coronavirus disease 2019 is rare, we hope to inform pediatric providers on the clinical course and management considerations as this pandemic continues to spread.
Advertising to children and teenagers is a multibillion-dollar industry. This policy statement reviews the forms of advertising that children and teenagers encounter, including newer forms of digital marketing, such as sponsored content, influencers, data collection, persuasive design, and personalized behavioral marketing driven by machine learning. Parents and pediatric health care providers need to be aware of the ways different marketing messages reach children and teenagers, including Internet sites, social media, and mobile apps. Evidence suggests that exposure to advertising is associated with unhealthy behaviors, such as intake of high-calorie, low-nutrient food and beverages; use of tobacco products and electronic cigarettes; use of alcohol and marijuana; and indoor tanning. Children are uniquely vulnerable to the persuasive effects of advertising because of immature critical thinking skills and impulse inhibition. School-aged children and teenagers may be able to recognize advertising but often are not able to resist it when it is embedded within trusted social networks, encouraged by celebrity influencers, or delivered next to personalized content. This policy statement expresses concern about the practice of tracking and using children’s digital behavior to inform targeted marketing campaigns, which may contribute to health disparities among vulnerable children or populations. Pediatricians should guide parents and children to develop digital literacy skills to prevent or mitigate negative outcomes, but it is equally important that policy makers and technology companies embrace digital design, data collection, and marketing practices within today’s broad digital environment that support healthier decision-making and outcomes.
Clinical documentation is a fundamental component of the practice of medicine. It has significantly evolved over the past decade, largely because of the growth of health information technology and electronic health records. Although government agencies and other professional organizations have published position statements on the structure and use of electronic documentation, few have specifically addressed the documentation needs for the care of children. A policy statement on electronic documentation of clinical care by general pediatric and subspecialist providers by the American Academy of Pediatrics is needed. This statement provides insight on the unmet needs of key stakeholders to direct future research and development of the electronic media necessary to enhance the wellness of children and improve health care delivery. It also addresses the challenges and opportunities for efficient and effective clinical documentation in pediatrics.