Advanced Pediatric Care™ guide developed by leading pediatric hospice and palliative care experts reflects national best practices for family education and support.
WASHINGTON, D.C. — Hospice provides vital support to people and families at the end of life, yet relatively few children and families benefit from this specialized care. Fewer than one in 10 children who die in the United States receive hospice care, underscoring an important opportunity to better support families facing a child’s serious illness.
The National Partnership for Healthcare and Hospice Innovation (NPHI), the national voice for nonprofit hospice and advanced illness care, recently released the Advanced Pediatric Care™ Patient & Caregiver Guide — a free national resource created by pediatric hospice and palliative care experts from nonprofit providers across the country to give families something the system has never reliably given them: national clear, trustworthy guidance when a child is seriously ill.
Families caring for children with serious illness often face overwhelming emotional, physical, and financial challenges. Parents and caregivers are frequently asked to make complex medical decisions while balancing caregiving responsibilities and everyday family life. The Advanced Pediatric Care™ Patient & Caregiver Guide was created to help ease that burden by providing reliable information and practical resources families can turn to throughout their child’s care journey.
“No family ever wants to imagine their child facing a serious or life-limiting illness,” said Tom Koutsoumpas, Founder and CEO of the National Partnership for Healthcare and Hospice Innovation. “But when the unimaginable does happen, families deserve the very best care, guidance, and support available.”
The guide includes practical information on:
- Understanding pediatric palliative care and hospice care
- Managing symptoms and improving comfort
- Supporting a child’s emotional and developmental needs
- Caring for parents, siblings, and other caregivers
- Communicating with children about illness
- Navigating difficult decisions and accessing additional support
The need for clear, practical guidance is especially important given the complex system families must navigate. Section 2302 of the Affordable Care Act has required state Medicaid programs to cover hospice and curative treatment concurrently for children since 2010, so no family has to stop fighting a child’s illness in order to get comfort care.
“Every child deserves as much comfort and quality of life as possible, regardless of diagnosis,” said Dr. Cameron Muir, Chief Medical & Innovation Officer at NPHI. “Families should never have to navigate a serious childhood illness without trusted guidance. This guide helps parents and guardians understand what pediatric palliative and hospice care can offer, empowers them to make informed decisions, and reminds them they are never alone.”
September is Childhood Cancer Awareness Month, which draws national attention to children facing cancer. But cancer is only part of the picture. Many children and families are also navigating serious chronic and complex conditions, underscoring the need for specialized care, coordination and support. The guide is available free of charge at www.nphihealth.org/pediatric. Families seeking a provider in their community can call 844-GET-NPHI (438-6744).
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