No abstract

Little is known about the optimal context in which to provide care for the more than 53,000 children who die each year in the United States. Poor training in pediatric palliative care contributes to care that is often fragmented and may neglect the physical, psychosocial, and spiritual needs of the child and family. Pediatric hospice care is frequently not available or not chosen by the family or health care providers. In response to a critical need to move beyond the disease oriented, hospital-based model with a lack of continuity between hospital and community-based medical services, we developed FOOTPRINTS, an innovative program of advanced care planning and care coordination. A continuity physician directs the treatment plan regardless of site of care. Staff members coordinate follow up and communication among hospital and community-based care providers. Spiritual support continues through bereavement. Education in the hospital and community supports provision of excellent palliative care by current providers. Satisfaction with this model of care has been high. More than 90% of health care providers and families perceived that the child and family needs as well as the health care provider needs were met by the advanced care planning process and written care plan. All continuity providers would refer another patient. The FOOTPRINTS program promotes quality of care and family and health care provider satisfaction with care. It has been developed to serve as a "best practice" model for care at life's end.

Although there were some differences in grief responses among parents, satisfaction-with-care scores were high. Further studies should examine the role of satisfaction with care in parental grief response and incorporate the reporting of experiences rather than simple ratings to measure satisfaction with care.

There was a good quality of care at the time of death for most patients, with minimal pain and suffering reported by providers. There were differences in perception explained by roles (physicians vs nurses). Future research should examine differences by provider experience and in other care settings.