The final plans for Pediatric Palliative Care Center (PPCC) at Rainbow Babies and Children’s Hospital are underway. The PPCC takes into account the growing need for relief services for children suffering with life-threatening illnesses. Suffering has increased as new therapies extend life, though in a very fragile and often technology-dependent state. Suffering in such children results from a number of well-described and studied sources.
These include:
▪ Pain and somatic symptoms
▪ Psychological suffering results from separation from family and home, fear of possible death or loss of function and worry about the well being of other family members
▪ Spiritual suffering experienced by even very young children as they try to understand what is happening and the potential of dying
To better meet these needs, the PPCC will act in a consult/service manner with the consulting will work with the PPCC team to determine the level of involvement for these patients. The PPCC has four general goals:
1. Pain and Symptom Management – By developing expertise in pharmacological and non-pharmacological control of symptoms, the PPCC will coordinate efforts by establishing resources within the Department of Pediatrics as well as with Pediatric Anesthesiology, Child Life Specialists and the Department of Psychology for acute and chronic pain management.
2. Education – Didactic courses to train medical students and professionals are being developed to deal with children suffering from life-threatening diseases. Topics will include communication skills during life-threatening illness or end-of-life care, analysis of ethical challenges, and methods of relieving the various forms of suffering in children listed above. These sessions will be organized and presented in close collaboration with and involvement of the Rainbow Center for Pediatric Ethics.
3. Discharge Planning – Often times, palliative care may be rendered at home or in other non-hospital settings to the financial and psychological benefit of the child and family. The PPCC will serve as a resource by helping to mobilize necessary resources to oversee home care of such children.
4. Case Management – Life-threatening diseases may affect several organ systems necessitating coordination of many medical needs. The PPCC is prepared to serve as the coordinating service, preventing such children from “falling through the cracks,” as can happen with the involvement of multiple subspecialists. Expertise in the management of medical technology is a vital part of such services, and the ability to manage the interplay between overlapping medical conditions resulting from one disease entity is integral in optimizing care for these children.