Background
According to the Centers for Disease Control Data for 2005, 5 children a day die in Pennsylvania… an estimated 1,800 families are living with the loss of their most precious gift, their child. “No matter what the circumstances it is a devastating, life altering experience….The death of a child is a family event not a medical event.” (Institute of Medicine: When Children Die.)
Therein lies a major difference between the care, treatment and loss of our most precious children compared to an elderly adult. The natural order of life is abruptly and irrevocably changed, although be it a child or an adult, the death of one is a loss to all. Many of us have faced loss and too many of us currently live each day with the grief associated with the death of our child. For these families - mothers, fathers, sisters and brothers: their lives are irrevocably altered and life as they had known it will never, ever be the same.
Far too many families have experienced the practical challenges in their ability to secure appropriate medical, psycho-social and financial counsel that is sensitive, caring and compassionate during the care of their child with a life-limiting condition.
A Call to Action
In July 2003, Liam’s Foundation for Pediatric Palliative Care (www.liamsfoundation.org) was established by Liam’s Mother and Grandmother to begin paving the way for pediatric healthcare reform in the Philadelphia area and surrounding counties. And, in September 2004, the first meeting of the Pittsburgh Pediatric Palliative Care Coalition (PPPCC) (www.pppcc.net) comprised of bereaved parents and pediatric healthcare professionals in the Pittsburgh area was held. As a result of PPPCC’s efforts in Western Pennsylvania region and the work and dedication of Liam’s Foundation in Eastern Pennsylvania, the Honorable Estelle B. Richman, Secretary of the Department of Public Welfare, was prevailed upon to convene a state-wide task force.
On January 12, 2008, the Pennsylvania Pediatric Palliative and Hospice Care Task Force (PPHC) kicked-off this most important process, which was hoped to have a major effect on the way pediatric health care is coordinated, delivered and expended to all families seeking such care and services. The goals of the Task Force included identifying challenges and possible solutions to providing services that apply to children who have life-limiting conditions and are at the end-of-life.
More than 400 families, professionals and other interested advocates participated in the process under the guidance of Uma Ramaswamy. From this comprehensive examination by the membership, an in-depth report was generated and presented to the Pennsylvania Legislature on May 27th, 2009. As an outgrowth of the Task Force, the Pennsylvania Children’s Hospice and Palliative Care Coalition (PA-CHaPCC) was formed and is continuing the work to improve the lives of children and families living with life-limiting, life-threatening conditions.