OUTCOMES OF CHILDREN IN A PERSISTENT VEGETATIVE STATE

Objective: To determine the long-term outcomes and resource utilizatio n of children discharged home in a vegetative state following neurolog ic 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 s tate. Interventions: Home care delivered, in part, by registered nurse s. Measurements: Assessed outcomes included survival/death, mental sta tus, functional status, costs, and personnel requirements and technolo gies used for home care. A mailed questionnaire and telephone follow-u p were used to assess patient awareness and caretaker satisfaction wit h home care. Results: Children were followed in the vegetative state f or 4.5 +/- 2.9 yrs. Six children died at home and two children died af ter 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 chi ldren remained totally dependent. Costs of care averaged >$90,000/yr p er patient. Care included 10 to 12 hrs/day of professional nursing car e, and extensive time investments by other personnel including public school personnel Conclusions: The long-term outcome for children disch arged from the hospital in a persistent vegetative state was poor. For ty percent of the patients died and, at best, children showed only min imal awareness after an average of 4.5 yrs. Care costs were >$90,000/y r per patient.