Utilization of hospice/home care in pediatric oncology A national survey

Abstract

The prevalence, utilization, and efficacy of home care services for children dying from cancer was examined. Information was obtained from a survey completed by 85 institutions in 47 states, 76% of the sample solicited. Home care services were offered by 85.9% of institutions; 43.8% of these administered their own programs and 56.2% relied upon community-based services. Institutions which provided their own services offered home care to a greater proportion of eligible patients, had a larger proportion of families accept this option, and had a smaller proportion of children return to the hospital to die than institutions which used community agencies. The most frequent problems with community agencies included inexperience with pediatric issues and procedures, inadequate pain management, and reluctance of families to work with unfamiliar staff. Institutionally administered programs were more likely to provide regularly scheduled home visits, care by pediatric oncology nurses, and bereavement follow-up. The most important factors inhibiting institutions from developing their own home care programs were anticipated problems with pain and other symptom management, uncertainty as to family competency to provide care, and concern regarding the effects of home care on patients and their families. Potential problems in providing home care services for children should be balanced against the expected benefits to the patient and family.