The case

The following question was brought for ethics consultation. Is it appropriate to initiate long-term ventilation for a child with severe neurologic compromise in order to avoid repeated respiratory exacerbations which necessitate transfer from his long-term care facility to a tertiary intensive care unit?

This case involved a 26-month-old male who was healthy at birth but developed a severe case of bronchiolitis caused by respiratory syncytial virus at two months of age. This illness resulted in apnea which was followed by cardiac arrest. Although he was successfully resuscitated, he did not recover neurologically and at the time of writing, approximately three years after his cardiac arrest, he was in a persistent vegetative state that was judged to be permanent.

The child was transferred to a chronic care facility at five months of age (three months after his cardiorespiratory arrest). He had a tracheostomy as well as a fundoplication and gastrostomy tube performed prior to his long-term placement. Once established in the long-term care facility the child required 23 transfers and admissions to a tertiary care facility over a 20-month period for episodes of hypercapnic respiratory failure. The child's respiratory drive was not consistently maintained and each time his respiratory drive failed he required admission to the pediatric intensive care unit (PICU) and mechanical ventilation for 7–10 days. Consideration of long-term ventilation at the chronic care facility was suggested to avoid these repeated transfers and to decrease his overall costs of care.