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Objective In this study, we aimed to develop and pilot a mixed-methods curriculum among pediatric subspecialty fellows that combined didactics, role-play, and bedside coaching with a procedure card. We hypothesized that this curriculum would improve fellows' ability to navigate difficult conversations and would be feasible to implement across training programs. Methods This study was conducted from 2019 to 2020. Phase 1 focused on establishing baseline performance. Phase 2 involved the education of participants and faculty. During phase 3, participants communicated difficult news to patients and families using the procedure card as a prompt with the aid of faculty coaching. Six months later, participants' performance was re-evaluated and compared with baseline performance. Results A total of 10 out of 17 (60%) participants completed the pilot study. Likert self-efficacy results revealed an improvement in the skill of delivering difficult news (3.0 pre-intervention, 4.1 post-intervention, p=0.0001), conducting a family conference (2.5 pre-intervention, 3.6 post-intervention, p=0.0001), and responding to emotions (3.4 pre-intervention, 4.2 post-intervention, p=0.0003). Investigator assessments showed improvement in fellows' ability to communicate information clearly (2.5 pre-intervention, 3.9 post-intervention, p=0.0001) and demonstrate empathy (2.7 pre-intervention, 3.3 post-intervention, p=0.005). Conclusions In this pilot study, coaching at the bedside with a procedure-card prompt was effective at improving specific self-perceived and observed communication skills. Future research is needed to evaluate modifications to this curriculum to enhance its feasibility.

* Abbreviation: CHD — : congenital heart disease Whether a child dies suddenly or after a long battle against a serious illness, the entire family is forced to make an unimaginably painful transition. This new reality may involve an adjustment in one’s identity, a loss of community, and an entrance into a new community of bereaved families. Studies show that death of a child can have long-term adverse effects on parental and sibling physical and mental health; indeed, parents and siblings have an increased risk of mortality after such a death.1–3 Although parental preparedness around end of life is fraught with complexities,4 the goal of effective bereavement care is to help families heal and process a child’s death while making the difficult transition to functioning with their grief and still finding joy in life and relationships.5 Yet feelings of abandonment persist, suggesting the health care system needs to do a better job supporting families facing this devastating transition. To better understand the unmet needs of newly bereaved families, Dr Levy (palliative medicine physician), Kristin Drouin (clinical social worker and bereavement counselor), and Dr Sood (psychologist) partnered with Ady Dorsett, a bereaved mother who developed and continues to oversee Hayden’s Heart. Hayden’s Heart is a well-established nonprofit organization that supports pediatric patients living with and dying from congenital heart disease (CHD) and their families. Ady previously collaborated with Dr Sood on a qualitative study of the psychosocial needs of families affected by CHD, including bereaved families.6 She then met with Dr Levy, Kristin Drouin, and Dr Sood to develop suggestions for clinicians on how best to support families … Address correspondence to Carly Levy, MD, Division of Palliative Medicine, Nemours Alfred I. duPont Hospital for Children, 1600 Rockland Rd, Wilmington, DE 19803. E-mail: clevy{at}nemours.org

This is a Commentary on the manuscript titled “Ethical Dilemmas in the Management of Infants with Necrotizing Enterocolitis Totalis” by Pennington E, Javid P, Mueller C, et al.

We sought to describe palliative care services available to children with cancer along with pediatric oncologists' current and ideal practices of palliative care involvement in children with cancer.A novel survey tool was administered via REDCap to attending pediatric oncologists in the United States. The survey remained open from June to September 2020.A total of 265 survey responses were evaluated. Most respondents endorsed that palliative care should "always" be consulted for the following scenarios: new diagnosis of advanced/metastatic disease (53%), uncontrolled symptoms (65%), bone marrow transplant (55%), and relapsed/refractory disease (73%). For those same scenarios, the majority noted the current practice was to "sometimes" or "usually" consult. Most respondents (92.6%) felt that palliative care should be consulted more frequently than they were currently being consulted.Compared with the current practice for various pediatric oncology departments, palliative care was not consulted as often as oncologists desired. While barriers to palliative care consultation are outlined in the literature, exploration of how to address them as well as identification of barriers specific to oncologists who are in favor of palliative care consultation are not well-described. Further research exploring these specific barriers is necessary to understand the disconnect between oncologists' attitudes and palliative care consultation.

Seriously ill pediatric patients may experience nausea and/or vomiting as a distressing symptom. Nausea and vomiting occur in almost half of children with cancer during their end-of-life period. There are multiple triggers that can lead to nausea and/or vomiting, including a variety of diseases and commonly used medications to treat serious illness including opiates. Identifying the source of nausea and/or vomiting, if possible, can dictate a targeted and effective treatment approach. This chapter reviews the pathophysiology thought to be responsible for eliciting nausea and/or vomiting, outlines a stepwise framework for evaluating patients with this symptom, and reviews targeted therapies including pharmacologic as well as supportive and integrative therapies.

The evaluation of pain in the neurologically impaired child can be difficult. Many of these children are unable to vocalize their symptoms and may instead exhibit a wide range of behaviors to indicate their discomfort. Pain occurs more frequently and at higher intensity for these children both because they are at risk for certain problems that are uncommon in typical childhood and because they can experience prolongation of symptoms due to challenges in locating the source. For many children within this population, a cause is not identified, and empiric medication trials and nonpharmacologic measures are utilized. This chapter presents a broad differential for suspected pain in the neurologically impaired child and discusses a range of interventions and therapies to consider.

Palliation in pediatric otorhinolaryngology is a rarely discussed but important aspect of care. This review encapsulates current thinking on pediatric palliative care (PC) and demonstrates, through one case, the impact of integrating PC into clinical care. We encourage early consideration of pediatric palliative care approaches for children with complex otorhinolaryngologic disorders.

Dyskeratosis congenita is a rare genetic condition of telomerase dysfunction in which patients are at an increased risk of squamous cell carcinoma (SCCa) of the oral cavity. We present here the youngest patient in the literature with a diagnosis of SCCa. We discuss the literature and management of this advanced presentation of SCCa in a child, stressing the importance of palliative care involvement in facilitating medical decision making.

Introduction: Although the incidence of severe chronic abdominal pain is unknown in children with complex chronic conditions (CCC), it can be a distressing and challenging symptom to treat when present. Severe chronic abdominal pain in children with CCC can result from multiple different causes, including but not limited to severe dysmotility, intestinal pseudo-obstruction, and chronic pancreatitis. Although primary pediatricians and/or primary subspecialists often manage this chronic pain, our palliative care team is often consulted for additional pain …

Background Necrotizing enterocolitis is the leading case of gastrointestinal-related morbidity in premature infants. Necrotizing enterocolitis totalis is an aggressive form of necrotizing enterocolitis, which has traditionally been managed with comfort care. Recent advances in management of short bowel syndrome have resulted in some reported long-term survival. Methods Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, studies that reported outcomes in children with necrotizing enterocolitis totalis were identified. The definition of necrotizing enterocolitis totalis was captured along with length of follow-up, patient demographics, and outcomes. Results A total of 766 articles were screened, of which 166 were selected for full article review. Of these, 32 articles included data on 414 patients with necrotizing enterocolitis totalis. In the majority of studies (52%), necrotizing enterocolitis totalis was not defined. Aggressive surgical therapy (defined as bowel resection or fecal diversion) was undertaken in 32 patients (7.7%), with a mortality rate of 68.8%. In contrast, nonaggressive surgical therapy was undertaken in 382 patients (92.3%), and the mortality in these patients was 95%. Long-term outcomes for necrotizing enterocolitis totalis survivors, such as length of time on parenteral nutrition, progression to liver and/or small bowel transplant, and quality of life, were not reported. Conclusion We found that there is no accepted definition of necrotizing enterocolitis totalis. Aggressive surgical therapy is rarely pursued, which likely drives the overall high mortality rate. This study underscores the importance of standardizing the definition of necrotizing enterocolitis totalis and capturing short and long-term outcomes prospectively. With more aggressive surgical therapy, more infants are likely to survive this abdominal catastrophe, which was once thought to be uniformly fatal.

Doctors are required to notify Child Protective Services (CPS) if parents do not provide appropriate medical care for their children. But criteria for reporting medical neglect are vague. Which treatments properly fall within the realm of shared decision-making in which parents can decide whether to accept doctors’ recommendations? Which treatments are so clearly in the child’s interest that it would be neglectful to refuse them? When to report medical neglect concerns to CPS may be controversial. It would seem inhumane to allow a child to suffer because of parental refusal to administer proper analgesia. In this ethics rounds, we present a case of an adolescent with chronic pain who is terminally ill. Her parents were not adherent to recommended analgesia regimens. Her palliative care team had to decide whether to report the case to CPS.

Objectives The United States declared the opioid crisis a Public Health Emergency in 2017 and recommended increasing access and availability of naloxone, a reversal agent for opioid overdose. In Massachusetts, there is a statewide standing order for naloxone, which allows pharmacists to dispense it without a prescription to any person at-risk of experiencing an opioid overdose or other persons who can assist individuals at-risk. The objective of this study was to determine whether pharmacists in Massachusetts have sufficient education and training to fulfill the duties associated with dispensing naloxone in community pharmacy settings. The researchers investigated the pharmacists’ ability to counsel patients both on naloxone and management of patients with an opioid overdose. Methods At the time of the study, pharmacies could elect to have a standing order for naloxone. A randomized sample of 100 pharmacies was generated from the 792 pharmacies with a standing order. From this sample, 79 of the 100 pharmacies were visited on the basis of convenience and distribution in eastern and central Massachusetts. At each pharmacy, a validated 25-item survey was administered to pharmacists. Results Fewer than half of participants knew that different formulations of naloxone possess different quantities. Although 52% of pharmacists indicated the need to call 9-1-1 when witnessing an opioid overdose, 8% knew to start rescue breathing, and 4% knew to place patients in the recovery position. Conclusion Despite regulations requiring all pharmacies with a standing order to provide training on naloxone, many of the pharmacists surveyed did not have a strong understanding about naloxone products or its pharmacology. The level of education Massachusetts pharmacists possess on naloxone products and administration is not sufficient to counsel patients regarding this medication. Increasing training requirements in pharmacy schools and continuing education offers potential solutions to the lack of knowledge in the community pharmacy setting.

Objective To describe auxologic, physical, and behavioral features in a large cohort of males with 47,XYY (XYY), ages newborn to young adult. Study design This is a cross-sectional descriptive study of male subjects with XYY who were evaluated at 1 of 2 specialized academic sites. Subjects underwent a history, physical examination, laboratory testing, and cognitive/behavioral evaluation. Results In 90 males with XYY (mean age 9.6 ± 5.3 years [range 0.5-36.5]), mean height SD was above average (1.0 ± 1.2 SD). Macrocephaly (head circumference >2 SD) was noted in 28/84 (33%), hypotonia in 57/90 (63%), clinodactyly in 47/90 (52%), and hypertelorism in 53/90 (59%). There was testicular enlargement for age (>2 SD) in 41/82 (50%), but no increase in genital anomalies. No physical phenotypic differences were seen in boys diagnosed prenatally vs postnatally. Testosterone, luteinizing hormone, and follicle stimulating hormone levels were in the normal range in most boys. There was an increased incidence of asthma, seizures, tremor, and autistic spectrum disorder (ASD) compared with the general population rates. Prenatally diagnosed boys scored significantly better on cognitive testing and were less likely to be diagnosed with ASD ( P Conclusions The XYY phenotype commonly includes tall stature, macrocephaly, macroorchidism, hypotonia, hypertelorism, and tremor. Physical phenotypic features were similar in boys diagnosed prenatally vs postnatally. Prenatal diagnosis was associated with higher cognitive function and less likelihood of an ASD diagnosis.

Program Goals: Simulation training or role playing has been shown to improve learning for physician trainees and has been used to teach and develop communication skills. Studies of one-time communication training for pediatric sub-specialty fellows show short-term improvement compared with self-directed reading; however, three-month follow-up shows nearly complete attrition of skills learned. There are no studies that have analyzed …

ospice and palliative medicine (HPM) is an emerging medical subspecialty initially recognized by the American Board of Medical Specialties in 2006. As the Institute of Medicine reported in 2014, health care delivery and the challenges of care at the end of children’s lives have evolved significantly over the past 15 years. The last decade has seen the growth of pediatric palliative care (PPC) programs at children’s hospitals and a transformation of the field. Fifty percent of children’s hospitals nationwide have a PPC program, with a peak in new program development occurring in 2008. New programs are almost immediately impactful, experience high referral volumes, and must quickly expand their workforce. Although HPM has a growing body of literature, the evidence for PPC appears to lag behind the clinical growth. Here we provide a focused and practical summary of evidence in pediatric HPM as a primer for those practicing in other subspecialties. Specifically, we review evidence by focusing on a few of the domains in HPM : (1) communication and psychosocial support; (2) pain and symptom management; (3) end-of-life care; and (4) ways to build a better health care system.We hope to strengthen understanding and partnerships between HPM and non-HPM clinicians and investigators and thereby improve patient care for children with serious illnesses.

A 5-week-old infant presented with a fever, and was diagnosed with congenital human immunodeficiency virus and histoplasmosis. Both infections were likely transmitted vertically. The child was effectively treated with antifungal medications and highly active antiretroviral therapy. This represents the first case of delayed presentation of vertically transmitted histoplasmosis, and the first case in a nonendemic area.

Speaking candidly with terminally ill children can be a challenging and at times daunting task. After decades of debate and a wealth of research, it has become increasingly accepted that open and honest communication is necessary for the psychological well-being of these patients. Dietrich Niethammer, a pediatric oncologist, recently published Speaking Honestly with Sick and Dying Children and Adolescents , which provides a comprehensive digest supporting the notion that honesty is the best approach for this patient population. Niethammer’s book offers a tour of formerly controversial questions that physicians, psychologists, anthropologists, social workers, and parents caring for sick and dying children have asked throughout history: how much do terminally ill children and adolescents actually understand about their illness and how much should they be told? Niethammer walks the reader through English, French, and German publications that have …