Bringing Social Context Into the Conversation About Pediatric Long-term Ventilation.

Abstract

Decisions to initiate long-term ventilation (LTV) for children with medical complexities often involve unclear risk/benefit ratios. Although the technology may prolong a child’s life, the added months to years could largely be spent in the hospital, a long-term care facility, or medical foster care, as well as at home. Clinicians who counsel families about initiating LTV must help them make value-based decisions that account for each child’s medical needs and the predicted experience with the technology. That experience depends substantially on how well the family can manage daily care at home: how well they can learn the necessary skills, dedicate the required time, and garner adequate support. Because the success of long-term technologies rests on home care provided by families, each family’s social context is relevant to the decision to initiate pediatric LTV. Social context (the physical, geographic, economic, and cultural circumstances in which children and their families live) will impact the child’s outcome; those children with medical complexity combined with adverse social factors have the poorest health among all children.1 A recent study showed that ∼2% of PICU patients across the United States received a tracheostomy and LTV; almost all of these children had chronic medical conditions.2 Substantial variability was noted in the postdischarge support systems provided to these medically complex patients and their families. Regional resources, such as home nursing, medical day care, and medical transportation, can reduce burdens for this population, but they receive inconsistent local, state, and federal support. Considerable caregiving demands for families managing home medical equipment are well described and can entail employment changes, geographic relocation, or disruption of family structure.3 Clinicians striving …