PPCC Advocacy Statement
Pennsylvania Pediatric Palliative Care Coalition (PPCC) wants critically ill children across the Commonwealth to have access to the life-enhancing service of palliative care. This means ensuring that providers across the spectrum are fully connected, with palliative care fully integrated, and that physicians, nurses, home health care aides, and anyone providing services to these children fully understand the benefits of, and how to provide, palliative care within the scope of their service provision.
Thus far, we have been approaching the problem in two ways:
- Ensuring that pediatric palliative care is part of an on-going dialogue – with particular attention to appropriate level of service in rural communities.
- Focusing on education – working to educate those providers who work with children about the importance of palliative care.
Patient Quality of Life Coalition
PPCC is a member of the Patient Quality of Life Coalition. The Patient Quality of Life Coalition was formed to advance the interests of patients and families facing serious illness, including survivors. The Coalition includes more than 25 nongovernmental organizations dedicated to improving quality of care and quality of life for these adults and children. The Coalition works to promote public policy that will improve and expand access to high-quality palliative care.
Federal Bill H.R. 3119: Palliative Care & Hospice Education and Training Act – PPCC is currently advocating for the federal bill relating to the education and training of healthcare professionals as they address end-of-life concerns for patients.
Concurrent Care for Children
The passage of the Affordable Care Act altered the Medicaid hospice benefit as it applies to children (age 0-20). This change holds potential for increased access to community-based supportive services for children with life-limiting illnesses.
For further information, contact PPCC.
Children’s Hospice International A non-profit organization that pioneers and promotes the idea that critically ill children should have access to hospice/palliative care along with curative care from the time their life-threatening illness has been diagnosed.
Pediatric Palliative and Hospice Care Task Force Report (PPHC)
The PPHC Task Force, convened by then Secretary of the Department of Public Welfare Estelle Richman, was a collaboration of more than 190 parents, siblings, family members, caregivers, doctors, nurses, hospice workers, social workers, therapists, administrators, lawyers, educators, and researchers. The PPHC Task Force prepared a report identifying challenges and systemic gaps children and their families encounter when attempting to access palliative and hospice care services in Pennsylvania, while simultaneously offering recommendations to resolve the identified issues. Published in 2008, the task force report continues to highlight the major challenges facing PA families today.