Renee D Boss1, Carrie M Henderson2, Jessica C Raisanen3, Nicholas A Jabre1, Kelly Shipman4, Benjamin S Wilfond5. 1. Johns Hopkins School of Medicine, Baltimore, MD; Johns Hopkins Berman Institute of Bioethics, Baltimore, MD. 2. University of Mississippi Medical Center, Jackson, MS; Center for Bioethics and Medical Humanities, Jackson, MS. 3. Johns Hopkins Berman Institute of Bioethics, Baltimore, MD. 4. Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, Seattle, WA. 5. Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, Seattle, WA; Department of Pediatrics, University of Washington School of Medicine, Seattle, WA.
Abstract
OBJECTIVE: To understand what considerations drive family decisions for, and against, pediatric home ventilation. STUDY DESIGN: Qualitative interviews with parents of children who faced a decision about home ventilation in the previous 5 years at 3 geographically dispersed institutions. RESULTS: In total, 38 families (42 parents) were interviewed; 20 families opted for pediatric home ventilation, and 18 families opted against. Approximately one-quarter of children had isolated chronic lung disease; the remainder had medical complexity that was expected to remain static or decline. Parent perspectives about home ventilation generally reflected whether the child was early, or later, in their disease trajectory. Early on, parents often interpreted prognostic uncertainty as hope and saw home ventilation as a tool permitting time for improvement. For families of children later in their disease course, often already with home technology and home nursing, home ventilation held less possibility for meaningful improvement. Nearly all families experienced the decision as very emotionally distressing. Reflecting back, most families described feeling satisfied with whatever decision they made. CONCLUSIONS: The 2 principal groups of families in our cohort-those with children whose respiratory insufficiency might improve, and those with children facing chronic decline-warrant targeted counseling approaches about initiating home ventilation. The distressing nature of this decision should be anticipated and family supports reinforced.
OBJECTIVE: To understand what considerations drive family decisions for, and against, pediatric home ventilation. STUDY DESIGN: Qualitative interviews with parents of children who faced a decision about home ventilation in the previous 5 years at 3 geographically dispersed institutions. RESULTS: In total, 38 families (42 parents) were interviewed; 20 families opted for pediatric home ventilation, and 18 families opted against. Approximately one-quarter of children had isolated chronic lung disease; the remainder had medical complexity that was expected to remain static or decline. Parent perspectives about home ventilation generally reflected whether the child was early, or later, in their disease trajectory. Early on, parents often interpreted prognostic uncertainty as hope and saw home ventilation as a tool permitting time for improvement. For families of children later in their disease course, often already with home technology and home nursing, home ventilation held less possibility for meaningful improvement. Nearly all families experienced the decision as very emotionally distressing. Reflecting back, most families described feeling satisfied with whatever decision they made. CONCLUSIONS: The 2 principal groups of families in our cohort-those with children whose respiratory insufficiency might improve, and those with children facing chronic decline-warrant targeted counseling approaches about initiating home ventilation. The distressing nature of this decision should be anticipated and family supports reinforced.
Authors: Meaghann S Weaver; Renee D Boss; Myra J Christopher; Tamryn F Gray; Stephanie Harman; Vanessa N Madrigal; Kelly N Michelson; Erin T Paquette; Rebecca D Pentz; Sara Scarlet; Connie M Ulrich; Jennifer K Walter Journal: J Palliat Med Date: 2021-11-22 Impact factor: 2.947