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Special Report: Conclusion

Part 6 of 6 in a Special Report on Concurrent Care for Children

Throughout this project is seemed that there were many gaps in the information provided. Either, there was no information provided in the aforementioned categories or the information provided was vague and spare. In this case, clinical guidance from operating pediatric hospices provided the widest breadth of information on how we might improve hospice care and outcomes for children and their families. Daniel’s Care, based out of Hospice of the Bluegrass in Kentucky is a great example. All members of the interdisciplinary team receive training on working with children and is available to families with or without insurance with no out-of-pocket cost to the family. Rather, Daniel’s Care operates on individual donations and grants. BJC Hospice in Saint Louis, Missouri, offers a variety of pediatric hospice and palliative programs. Wings, a home-based program, helps with acute, chronic and terminal illness. Expressive Therapy, meant for children in hospice or with siblings in hospice, aims to allow children to express their “thoughts and emotions through art, music, play, writing and storytelling.” Their Perinatal Hospice Program assists parents who will eventually give birth to a child with a terminal illness. Wings on Wheels is a mobile art and music therapy program that supports children and young adults. These programs uniquely speak to children. They also address that siblings are greatly affected by terminal illness. While these are not written into legislature, they may set a precedent for other hospices who seek to better address their pediatric populations.