Developing the Care Model for Comprehensive Outpatient Pediatric Palliative Care

Children continue to lose their lives to life threatening and life limiting illnesses. Less than ten percent of them receive palliative or hospice support. This project addresses design and development of an outpatient model to provide comprehensive pediatric palliative care. Outpatient access to these services is one of the largest obstacles families face in receiving this care outside of a hospital setting. The state of Nevada presently has no comprehensive outpatient based pediatric palliative care program. Of approximately 53,000 children (age 0-19 years) per year that die in the United States.(Heron, 2013) In Nevada approximately 62% of the children die from life threatening and life limiting illnesses considered natural causes. (The Executive Committee to Review the Death of Children, 2011) Their quality of life and the death experience for the child and the family is compromised when they are not given the opportunity to receive palliative care services. The objectives are: 1) Design a clinical care model demonstrating the ability to provide comprehensive palliative care services for children with life threatening and life limiting diseases from hospital or outpatient consultation throughout the trajectory of their lifespan in an outpatient clinic setting. 2) Present the clinic care model proposal and engage in discussion/feedback with key stakeholders in a non-profit pediatric specialty care center in Nevada. 3) Identify funding opportunities for the program development and billing practices to include in the proposal for the key stakeholders to consider. 4) Develop collateral material to educate and publicize the proposed services if it is accepted and becomes a collaborative or individual program. 5) Submit an abstract summarizing the proposed care model for poster or presentation at appropriate venue conference or meeting. Review of the literature reveals that recommendations from pediatric experts began in 2000 for broader access to palliative care for pediatric patients. Development has been slow and most programs are hospital based creating a gap to service when children are not in the hospital. Review of data in Nevada identified approximately 1000 children per year are born with conditions that would benefit from outpatient palliative care being available. Additionally, there are just over 200 deaths per year of children in Nevada. The expertise of professionals in palliative care offers many benefits to families in establishing care goals, addressing quality of life, psychosocial support, and discussing end of life needs. Partnership between palliative services and hospice services for children allows for an improved continuity from the time of diagnosis for these children and families. Studies have shown fewer emergency visits, shorter and fewer hospitalizations, fewer painful procedures, better symptom management, and families improved satisfaction with care when palliative care is involved. Presentation of the clinic based care model was presented to the Executive Committee of a non-profit pediatric specialty care center in November 2014 for consideration to add this specialty to their services