In-Home Intravenous Dexmedetomidine Infusion for Treatment of Dystonia: A Pediatric Case Report.

The off-label use of an intravenous dexmedetomidine infusion is an option for refractory symptoms in pediatric palliative care with a few published cases of in-home use, most limited to end-of-life care. After an intrathecal baclofen pump malfunction with meningitis and medication withdrawal, a 17-year-old adolescent with quadriparetic cerebral palsy and paroxysmal autonomic instability experienced relief of refractory pain and dystonia with an in-home intravenous dexmedetomidine infusion. His interdisciplinary care team collaborated to establish safety measures and adjust his home medication regimen to further improve quality of life well before his end of life.

Factors Associated With Palliative Care Birth Planning at a Pediatric Hospital.

OBJECTIVE: To identify factors associated with the receipt, completion, and goals of palliative care birth plans during the prenatal period. DESIGN: Retrospective observational study of medical record data. SETTING: Midwestern U.S. quaternary pediatric hospital. PARTICIPANTS: Maternal-fetal dyads who received maternal-fetal medicine and palliative care from July 2016 through June 2021 (N = 128). METHODS: Using demographic and clinical predictors, we performed descriptive statistics, group comparisons (chi-square or Fisher exact test and Wilcoxon rank sum test or Student t test), and logistic regression for three outcomes: birth plan offered, birth plan completed, and goals of care (comfort-focused vs. other). RESULTS: Of 128 dyads, 60% (n = 77) received birth plans, 30% (n = 23) completed them, and 31% (n = 40) expressed comfort-focused goals. Participants with comfort-focused goals compared to other goals were more likely to receive birth plans, odds ratio (OR) = 7.20, 95% confidence interval (CI) [1.73, 29.9], p = .01. Participants of non-Black minority races had lower odds of being offered birth plans when compared to White participants, OR = 0.11, 95% CI [0.02, 0.68], p = .02. Odds of being offered (OR = 11.54, 95% CI [2.12, 62.81], p = .005) and completing (OR = 4.37, 95% CI [1.71, 11.17], p < .001) the birth plan increased with each prenatal palliative care visit. Compared to those without, those with neurological (OR = 9.32, 95% CI [2.60, 33.38], p < .001) and genetic (OR = 4.21, 95% CI [1.04, 17.06], p = .04) diagnoses had increased odds of comfort-focused goals. CONCLUSION: Quality improvement efforts should address variation in the frequency at which birth plans are offered. Increasing palliative care follow-up may improve completion of the birth plan.