Challenges in Pediatric Home-Based Hospice and Palliative Care: A Case Series.

Pediatric home-based hospice and palliative care is a growing and important sub-field within the larger pediatric palliative care landscape. Despite research demonstrating the clinical and systemic efficacy of pediatric home-based hospice and palliative care, there remain barriers to its optimal development, implementation, and dissemination as well as best clinical practice knowledge gaps. This case series presents specific examples of ubiquitous challenges in pediatric home-based hospice and palliative care in hopes of guiding future research, education, advocacy, and program development efforts.

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.

Home-Based Pediatric Hospice and Palliative Care Provider Visits: Effects on Healthcare Utilization.

OBJECTIVE: This hypothesis-generating study sought to assess the impact of home-based hospice and palliative care (HBHPC) provider home visits (HV) on healthcare use. STUDY DESIGN: Retrospective review of individuals ages 1 month to 21 years receiving an in-person HBHPC provider (MD/DO or APN) HV through 2 HBHPC programs in the Midwest from January 1, 2013, through December 31, 2018. Descriptive statistics were calculated for healthcare use variables. Paired t test or Wilcoxon signed-rank test compared the changes in healthcare use the year before and year after initial provider HVs. RESULTS: The cohort included 195 individuals (49% female), with diagnoses composed of 49% neurologic, 30% congenital chromosomal, 11% oncologic, 7% cardiac, and 3% other. After implementation of HBHPC services, these patients showed decreases in the median (IQR) number of intensive care unit days (before HV, 12 [IQR, 4-37]; after HV, 0 [IQR, 0-8]; P < .001); inpatient admissions (before HV, 1 [IQR, 1-3]; after HV, 1 [IQR, 0-2]; P = .005); and number of inpatient days (before HV, 5 [IQR, 1-19]; after HV, 2 [IQR, 0-8]; P = .009). There was an increase in clinically relevant phone calls to the HBHPC team (before HV, 1 [IQR, 0-4] vs after HV, 4 [IQR, 1-7]; P < .001) and calls to the HBHPC team before emergency department visits (before HV, 0 [IQR, 0-0] vs after HV, 1 [IQR, 1-2]; P < .001). CONCLUSION: HBHPC provider HVs were associated with fewer inpatient admissions, hospital days, and intensive care unit days, and increased clinically relevant phone calls and phone calls before emergency department visit. These findings indicate that HBHPC HV may contribute to decreased inpatient use and increased use of the HBHPC team.