Where do families turn? Ethical dilemmas in the care of chronically critically Ill children.

Advancements in early diagnosis and novel treatments for children with complex and chronic needs have improved their chances of survival. But many survive with complex medical needs and ongoing medical management in the setting of prognostic uncertainty. Their medical care relies more and more on preference-sensitive decisions, requiring medical team and family engagement in ethically challenging situations. Many families are unprepared as they face these ethical challenges and struggle to access relevant ethical resources. In this paper, Timmy's narrative, situated in the context of what is known about ethical challenges in the care of children with chronic critical illness (CCI), serves as a case study of the gap in available ethical resources to guide families in their approach to difficult decision making for children with significant medical complexity and CCI. Our author group, inclusive of parents of children with complex medical needs and medical professionals, identifies domains of ethical challenges facing families of children with CCI and we highlight the development of family/caregiver-oriented ethics resources as an essential expansion of pediatric bioethics.

Building clinician-parent partnerships to improve care for chronically critically Ill children: A pilot project.

OBJECTIVE: Multicenter pilot to assess feasibility, acceptability, and educational value of videos for families and clinicians regarding unique inpatient challenges of pediatric chronic critical illness. METHODS: Videos were developed for 3 hospitalization timepoints: 1) chronic critical illness diagnosis, 2) transfers, 3) discharge. Parents of hospitalized children, and interdisciplinary clinicians, were recruited to watch videos and complete surveys. RESULTS: 33 parents (16 English-speaking, 17 Spanish-speaking) and 34 clinicians participated. Enrollment was better for families than clinicians (78% vs. 43%). Video acceptability was high: families and clinicians endorsed verisimilitude of depicted hospitalization challenges for chronic critical illness. All families felt the videos would help other families, all clinicians felt they would help other clinicians. Families gained expectations for the hospital course, discovered resources for hospitalization challenges, and learned there are other families in similar situations. Clinicians learned to recognize chronic critical illness, and how families experience hospitalizations, transfers, and discharges. CONCLUSION: Educational videos about pediatric chronic critical illness were overall feasible, acceptable, and educational for hospitalized families and clinicians. PRACTICE IMPLICATIONS: Just-in-time hospital education about pediatric chronic critical illness is valuable to families and clinicians; next steps are to assess potential to reduce gaps in care of children with chronic critical illness.

Quality Improvement Targeting Non-pharmacologic Care and As-needed Morphine Improves Outcomes in Neonatal Abstinence Syndrome.

Despite the rising incidence of neonatal abstinence syndrome (NAS), there remains wide practice variation in its management. Many recent studies have focused on implementing new symptom scoring systems, typically as part of larger improvement interventions. Despite the continued use of the Finnegan Scoring System, we performed a quality improvement project to reduce the day of life at discharge and cumulative opioid exposure for newborns with NAS. Methods: We developed a protocol for NAS treatment emphasizing early transfer to general pediatric units, maximization of non-pharmacologic care, and use of as-needed morphine whenever pharmacologic treatment is required. Outcome metrics were the day of life at discharge and cumulative morphine exposure. As a process measure, we also monitored the day of life at transfer to general pediatric units. In addition, we utilized statistical process control charts to track changes in performance. Results: Twenty-eight patients met the inclusion criteria for analysis over 24 months following project initiation. Day of life at discharge decreased by 61% (20.0 versus 7.89 days, P < 0.001), and cumulative morphine exposure decreased by 81% (13.66 versus 2.57 mg morphine, P ≤ 0.001). Day of life at transfer to general pediatric units decreased by 49% (11.13 versus 5.7 days, P = 0.002). There were no readmissions or other identified adverse events. Conclusions: We achieved significant improvements in NAS outcomes using improved non-pharmacologic care and as-needed morphine. Moreover, the improvement did not require transitioning to a new scoring system. These results support the efficacy and safety of as-needed morphine for NAS management.