OUTCOMES OF CHILDREN IN A PERSISTENT VEGETATIVE STATE

Objective: To determine the long-term outcomes and resource utilization of children discharged home in a vegetative state following neurologic injury. Design: A case series. Setting: Patients' homes. Patients: Twenty children discharged from acute and chronic care hospitals with a diagnosis and discharge examination consistent with the vegetative state. Interventions: Home care delivered, in part, by registered nurses. Measurements: Assessed outcomes included survival/death, mental status, functional status, costs, and personnel requirements and technologies used for home care. A mailed questionnaire and telephone follow-up were used to assess patient awareness and caretaker satisfaction with home care. Results: Children were followed in the vegetative state for 4.5 +/- 2.9 yrs. Six children died at home and two children died after rehospitalization. Twelve children survived at home, all for >1 yr; eight children survived for >3 yrs. Most patients were stable after the first year of home care. Twelve of 13 caretakers felt their child had some minimal awareness (e.g., voice recognition), although all children remained totally dependent. Costs of care averaged >$90,000/yr per patient. Care included 10 to 12 hrs/day of professional nursing care, and extensive time investments by other personnel including public school personnel Conclusions: The long-term outcome for children discharged from the hospital in a persistent vegetative state was poor. Forty percent of the patients died and, at best, children showed only minimal awareness after an average of 4.5 yrs. Care costs were >$90,000/yr per patient.