Attributable Delay of Discharge for Children with Long-Term Mechanical Ventilation

Abstract

Objective To assess the reasons for discharge delays for children with long-term mechanical ventilation. Study design Charts of children (0-18 years of age) with a new tracheostomy in the Pulmonary Habilitation Program at the Ann and Robert H. Lurie Children's Hospital of Chicago were retrospectively reviewed for demographic information, medical diagnoses, medical stability, discharge to home, reasons for discharge delay, and hours of staffed home nursing. All patients were discharged on mechanical ventilation. Discharge delay was defined as >10 days after medical stability. Hospital charges were analyzed and excess charges quantified beginning with the date of delay. Descriptive statistics and Pearson c 2 tests were used to compare nursing hours and demographics. Results Of 72 patients, 55% were male with mean age 1.8 years (SD 3.8) at tracheostomy placement. The most common long-term mechanical ventilation indication was chronic lung disease (n = 47, 65%); 54% had discharge delays, the majority were primarily due to lack of home nursing (62%), followed by delay of caregiver training (18%), caregiver health and social issues (8%), and delay in a transitional care facility bed (8%). Of the 39 delayed patients, 10%

Home nursing for children with home mechanical ventilation in the United States: Key informant perspectives

“…Providers described an overall severe deficiency in the workforce, particularly nurses with expertise in pediatrics and ventilator management. The American Academy of Pediatrics Section on Home Care, Committee on Child Health Financing's policy statement describes that, “Payments for home health care services should be sufficient to maintain an adequate provider work force with the pediatric‐specific expertise and skills to care for children with medical complexity or developmental disability.” 2 Despite strong support from pediatric leadership, we suspect that the largest limiting factor toward successful implementation of universal standards of care is severe resource scarcity which has been described as impacting care in several recent works 4,12,13 . It would be predictably impossible to provide 24‐h caregiving in a setting without ample home nursing support, and our study suggests that this is the case in the vast majority of regions.…”

“…In some regions, transitional care centers are utilized as intermediate models of care to prepare for complex discharges and can help to appropriately focus on transition readiness while liberating finite acute care beds 32 . However, despite the complexity of discharge and parental desire for tailored discharge teaching, 33 few transition‐focused centers exist and efficient discharge is often limited by home healthcare shortages 12,34 …”

“…However, private duty and block home nursing services that allow these children to safely live in the community are limited, 2–5 increasing the responsibilities of family caregivers, often to the detriment of their employment and health 6–11 . Further, home nursing shortages are associated with increased length of hospital stay for children with new technologies 12,13 …”

Transition From an ICU Ventilator to a Portable Home Ventilator in Children

“…2 The cost for supporting mechanical ventilation in the home is typically less than in the hospital setting. [3][4][5] The estimated prevalence of children # 18 years of age utilizing home mechanical ventilation in the Unites States is 4.7-6.4 children per 100,000. 6 Although chronic respiratory failure represents the primary need for prolonged ventilation, underlying diagnoses vary and may include bronchopulmonary dysplasia (BPD), neuromuscular disease, congenital heart disease, spinal cord injury, traumatic brain injury, and many more.…”

The Precarious Imperative of Home Nursing for Technology-Dependent Children

“…The findings from the study by Sobotka et al in this volume of The Journal, documenting the delays in initial hospital discharge for children newly started on mechanical ventilation due to problems securing adequate home nursing, provide further important evidence of this dangerous state of affairs. 1 Without doubt, home nursing is imperative for this population. Since the 1960s, pediatric care has seen a remarkable increase in the range and effectiveness of medical technology, from mechanical invasive and noninvasive ventilation to extracorporeal membranous oxygenation to peritoneal dialysis to total parental nutrition.…”