Select a story below to read more about each individual. Samuel John Austin James (A.J.) Theresa Case Daniel Rina Cal Maria Kefalas: Gentle Warrior During the worst time of her life, Maria Kefalas had a defining moment, when a simple statement from a cherished friend unexpectedly transformed her way of thinking and opened a new world of possibility to Continue Reading...Read more
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I Think My Child Needs In-Home Nursing… Now What? By Elisabeth McNulty, Pediatric Family Support Specialist (Bayada) Having a chronically ill child is hard. Really hard. It affects your entire family, who must adjust to their “new normal.” As a caregiver, your days are consumed with making phone calls, going to doctors’ appointments, managing therapies, giving medicine, advocating, and caring Continue Reading...Read more
Pediatric Palliative Care Coalition plays a key role in initiating and implementing systemic change through legislative action and advocacy work. We meet with and inform Pennsylvania legislators about the importance of access and availability, education and funding for palliative and hospice services for children. In addition, our goal is to ensure that future legislation will encompass positive changes and much-needed Continue Reading...Read more
Q: What does “Pediatric Palliative Care” mean? A: Pediatric palliative care, often called “supportive care” is a relatively new concept that has different meanings to different people and institutions. Quality of living and control of pain are generally top priorities. Ideally, it means comprehensive, family-centered, humane care for a seriously ill child and his (her) family from the moment of Continue Reading...Read more
Definitions Glossary/Terminology Acronyms and Terms Used in Pediatric Palliative and Hospice Care Definitions Pediatric Palliative Care (PPC) Developed by Children’s Hospice & Palliative Care Coalition’s Professional Advisory Committee, 2007 World Health Organization Definition of Palliative Care Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through Continue Reading...Read more
For Pennsylvania resources, please visit the PA Resource Map Planning Guides for End-of-Life Choices: Voicing My Choices – Planning guide for adolescents and young adults; Five Wishes American Academy of Hospice and Palliative Medicine (AAHMP) AAHMP – Palliative Doctors American Academy of Pediatrics – Hospice and Palliative Medicine Casey Cares Foundation Center to Advance Palliative Care (CAPC) Children’s Hospice International Circle Continue Reading...Read more