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Outcomes in pediatric patients with ventricular assist devices (VADs) for advanced heart failure (HF) are improving, but the risk of associated morbidity and mortality remains substantial. Few data exist on the involvement of pediatric palliative care (PPC) in this high-risk patient population. We aimed to characterize the extent of palliative care involvement in the care of patients requiring VAD placement at our institution. Single-center retrospective chart review analyzing all VAD patients at a large pediatric center over a 4 year period. Timing and extent of palliative care subspecialty involvement were analyzed. Between January 2014 and December 2017, 55 HF patients underwent VAD implantation at our institution. Pediatric palliative care utilization steadily increased over consecutive years (2014: <10% of patients, 2015: 20% of patients, 2016: 50% of patients, and 2017: 65% of patients) and occurred in 42% (n = 23) of all patients. Of these, 57% (n = 13) occurred before VAD placement while 43% (n = 10) occurred after implantation. Patients who died during their VAD implant hospitalization (24%, n = 13) were nearly twice as likely to have PPC involvement (62%) as those who reached transplant (38%). Of those who died, patients who had PPC involved in their care were more likely to limit resuscitation efforts before their death. Four patients had advanced directives in place before VAD implant, of which three had PPC consultation before device placement. Three families (5%) refused PPC involvement when offered. Pediatric palliative care utilization is increasing in VAD patients at our institution. Early PPC involvement occurred in the majority of patients and appears to lead to more frequent discussion of goals-of-care and advanced directives.

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Pediatric palliative care is a comprehensive treatment approach (physical, psychological, social, spiritual) for children living with life-threatening conditions. These patients and siblings, as well as children of ill parents, face extraordinary psychological challenges. Structured art techniques incorporated into psychotherapy can be powerful for children dealing with life-and-death realities. This article provides the rationale, instructions, and examples for 3 techniques that the author has adapted for children facing illness and bereavement. Although these art techniques are simple to administer, they frequently evoke complex and powerful responses and thus are intended for use by or in consultation with mental health professionals.

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Children who live with a complex chronic or life-threatening illness face extraordinary challenges. Whether they are receiving disease-oriented treatment (aimed at potential cure or prolongation of life) or palliative treatment-or both concurrently-our challenge is to enhance their comfort and minimize their distress. Symptom management is thus a critical component of pediatric palliative care. Symptoms may be either physical or psychological in nature (or a confluence of both) and their effective management has a direct impact on the child's quality of life. This article provides an integrative overview of children's experience of selected physical and psychological symptoms, as expressed through their words and images. Understanding their perspectives is an essential component in the design and provision of optimal symptom management. Included, as well, are examples from siblings-a reminder of the profound impact of illness on these children who also "live" the experience, albeit in a different way. The symptoms that are described are pain, nausea and vomiting, fatigue, weakness, seizures, hair loss, depression, and anxiety. Although psychological symptoms are often inextricable from the physical, they may also present independently as part of the overall illness experience.

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BACKGROUND: Pediatric fellows receive little palliative care (PC) education and have few opportunities to practice communication skills. OBJECTIVE: In this pilot study, we assessed (1) the relative effectiveness of simulation-based versus didactic education, (2) communication skill retention, and (3) effect on PC consultation rates. DESIGN: Thirty-five pediatric fellows in cardiology, critical care, hematology/oncology, and neonatology at two institutions enrolled: 17 in the intervention (simulation-based) group (single institution) and 18 in the control (didactic education) group (second institution). Intervention group participants participated in a two-day program over three months (three simulations and videotaped PC panel). Control group participants received written education designed to be similar in content and time. MEASUREMENTS: (1) Self-assessment questionnaires were completed at baseline, post-intervention and three months; mean between-group differences for each outcome measure were assessed. (2) External reviewers rated simulation-group encounters on nine communication domains. Within-group changes over time were assessed. (3) The simulation-based site's PC consultations were compared in the six months pre- and post-intervention. RESULTS: Compared to the control group, participants in the intervention group improved in self-efficacy (p = 0.003) and perceived adequacy of medical education (p < 0.001), but not knowledge (p = 0.20). Reviewers noted nonsustained improvement in four domains: relationship building (p = 0.01), opening discussion (p = 0.03), gathering information (p = 0.01), and communicating accurate information (p = 0.04). PC consultation rate increased 64%, an improvement when normalized to average daily census (p = 0.04). CONCLUSIONS: This simulation-based curriculum is an effective method for improving PC comfort, education, and consults. More frequent practice is likely needed to lead to sustained improvements in communication competence.

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OBJECTIVE: Burnout is a work-related syndrome characterized by emotional exhaustion (EE), depersonalization (DP), and lack of personal accomplishment (PA). We hypothesized that the transition into an environment of high physical, intellectual, and emotional demands of the medical profession would lead to an increase in the prevalence of burnout in pediatric residents, which would remain high throughout residency. METHODS: The Maslach Burnout Inventory (MBI) was administered to pediatric residents at Lucile Packard Children's Hospital 6 times between February 2010 and February 2012. These times corresponded to the start of residency, mid-intern year, end-intern year, mid-junior year, end-junior year, and mid-senior year. RESULTS: Mean values of burnout components changed significantly between the start of residency and mid-intern year. EE increased from 15.8 to 24.5 (P < .001), DP increased from 4.5 to 9.2 (P < .001), and PA decreased from 40.2 to 38.3 (P = .04). Similarly, the prevalence of burnout increased from 17% to 46% (P = .012), or 2% to 24% (P = .002) using more restrictive criteria, between the start of residency and mid-intern year. Significant changes in mean scores or prevalence of burnout were not found between any other consecutive times throughout residency. CONCLUSIONS: This longitudinal study documented a significant increase in the components of burnout among pediatric residents between the start of residency and mid-intern year, which persisted through the PGY2 and PGY3 years. Further studies are warranted to identify correlates of resident burnout and to develop preventative strategies to reduce its occurrence.

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This study examined the current state of bereavement care at a university-based children's hospital from the perspective of the interdisciplinary staff. In all, 60 staff members from multiple disciplines participated in in-depth interviews. In at least two-thirds of the interviews, issues related to the bereavement experience of both staff and families emerged and were consistently identified. Themes included: disparities in bereavement care based on relationship factors; logistics of time and space; geographical distances; the different cultures and languages of families; continuity in family follow-up; needs of siblings and other family members; staff communication, cooperation, and care coordination; staff suffering; and education, mentoring, and support for staff. This evidence-based needs assessment furnishes an empirical basis for the design and implementation of bereavement services for both families and staff. It can serve as a template for evaluation at other children's hospitals and thus contribute to the sound and creative development of the field of pediatric palliative care.

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