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Context and objectives Although multiple national organizations have created consensus guidelines and metrics for pediatric palliative care (PPC), standardized implementation and measurement has been challenging. In 2016, 6 PPC physician-experts in program development and quality improvement (QI) formed a healthcare learning collaborative network entitled the Pediatric Palliative Improvement Network (PPIN). Methods The primary drivers identified were 1) Feasibility of a national learning network demonstrated through the completion of one small QI project, 2) Standard education in QI methodology and 3) Salient pediatric palliative care operational, clinical and satisfaction metrics clearly defined. Results PPIN now includes146 members representing 51 organizations. In 2019 the group completed a national collaborative QI project focused on pain assessment at the time of initial consult, demonstrating a national increase in pain assessment from 75.8% to >90% over 12 months. PPIN has hosted two national QI workshops training more than 50 PPC clinicians in QI, with a 2-hour webinar provided in 2020 due to COVID. Monthly calls since 2017 provide QI methods “refreshers”, share local works in progress, and provide infrastructure for future collaborative projects. Conclusions PPIN has become a sustainable organization which improves the quality of PPC through focus on national QI methods training, successful collaborative projects, and the creation of a learning and peer support community with regular calls. With the advent of the Palliative Care Quality Collaborative in 2020, PPIN provides critical educational and organizational infrastructure to inform ongoing quality efforts in PPC, now and in the future.

Pediatric palliative care clinicians coordinate communication among clinicians, balance providing information to families with the emotional support they need to feel comforted in those decisions, and adapt their mode of communication to “match” the developmental age and capacity of the child, the dynamics of the family, and their cultural and religious dimensions. This chapter explores the importance of communication and provides useful tools to tackle these conversations empathetically. It also delves into communication about goals of care, prognosis, and managing hope. Clinicians can utilize these practical frameworks to improve communication and establish therapeutic alliances with patients and their families.

Background: The experience of starting and growing a pediatric palliative care program (PPCP) has changed over the last 10 years as rapid increases of patient volume have amplified challenges relat...

Communication is key in optimizing medical care when a child is approaching end of life (EOL). Research is yet to establish best practices for how medical teams can guide intrafamily communication (including surviving siblings) when EOL care is underway or anticipated for a pediatric patient. While recommendations regarding how medical teams can facilitate communication between the medical team and the family exist, various barriers may prevent the implementation of these recommendations.This review aims to provide a summary of research-to-date on family and medical provider perceptions of communication during pediatric EOL care.Systematic review.Findings from a review of 65 studies suggest that when a child enters EOL care, many parents try to protect their child and/or themselves by avoiding discussions about death. Despite current recommendations, medical teams often refrain from discussing EOL care with pediatric patients until death is imminent for a variety of reasons (e.g., family factors and discomfort with EOL conversations). Parents consistently report a need for honest complete information, delivered with sensitivity. Pediatric patients often report a preference to be informed of their prognosis, and siblings express a desire to be involved in EOL discussions.Families may benefit from enhanced communication around EOL planning, both within the family and between the family and medical team. Future research should investigate a potential role for medical teams in supporting intrafamily communication about EOL challenges and should examine how communication between medical teams and families can be facilitated as EOL approaches.

Describe 3 approaches to enhance collaboration between palliative care and cancer researchers. Successful integration of palliative care with oncologic care requires an understanding of specific challenges, opportunities, and strategies. Among challenges, the taskofmeetingpalliative careneedswhile supportingpatients, families, and clinicians who wish to continue cancer-directed treatment, including experimental therapies, is especially complex. Rapid developments in oncologic therapies with better outcomes for some malignancies may make it harder to establish realistic and appropriate goals of care. Other important issues include the appropriate distribution of responsibilities for palliative care within the healthcare team, so that not only are the contributions of clinicians across disciplines and professions valued, optimized, and coordinated, but also that patients with cancer receive the benefits of both generalists and specialists in palliative care. Effective collaboration between palliative care and cancer researchers is essential to enhance the evidentiary foundation for integrated care and to ensure attention to the palliative needs of patients participating in clinical trials. In addition, the development of innovative strategies is neededaswemakeprogress in educating the clinical workforce, including oncologists, other generalists, andpalliative care specialists toprovidepalliative care together with cancer care. Models of integration of palliative care in oncologymust fit the needs of patients, families, and providers in community settings (inpatient and outpatient), where most cancer care in the US is delivered, as well as in academic referral centers. Finally, in our rapidly changing healthcare environment, palliative caremust be paired with cancer care in ways that are appropriate across different systems for reimbursement, including distinctive systems that apply in some care hospitals. In the proposed workshop, we will bring together individuals with relevant expertise from across the country to provide an interprofessional perspective, help participants think about key topics, and engage them in envisioning the future for palliative care at the forefront of cancer care.

To describe the use of opioids and sedatives to pediatric patients dying in the hospital in the 2 weeks preceding death.We conducted a retrospective study on opioid and sedation medication exposure among children who die in hospitals in the US by using large administrative data sources. We described patterns of exposure to these medications for deceased inpatients (21 years of age) between 2007 and 2011 (n = 37,459) and factors associated with the exposure. Multivariable logistic regression models were used to estimate the ORs.Overall, 74% patients were exposed to opioids or sedatives in the 14 days before death. Among patients with 6 or more hospital days before death, the daily exposure rate ranged from 73% (the sixth day before death) to 89% (the day of death). The most commonly used medications were fentanyl (52%), midazolam (44%), and morphine (40%). Older age (ORs 1.6-3.7), black race (ORs 0.8), longer hospital stay (ORs 6.6-9.3), receiving medical interventions (including mechanical ventilation, surgery, and stay in the intensive care unit, ORs 1.7-2.6), having comorbidities (ORs 1.7-2.4), and being hospitalized in children's hospitals (ORs 4.0-4.5) were associated with exposure of opioid and sedation medication on adjusted analysis.Although most pediatric patients terminally hospitalized are exposed to opioid and sedation medication, some patients do not receive such medications before death. Given that patient and hospital characteristics were associated with opioid/sedative exposure, these findings suggest areas of potential quality improvement and further research.