Pediatric palliative care in the community.

Early integration of pediatric palliative care (PPC) for children with life-threatening conditions and their families enhances the provision of holistic care, addressing psychological, social, spiritual, and physical concerns, without precluding treatment with the goal of cure. PPC involvement ideally extends throughout the illness trajectory to improve continuity of care for patients and families. Although current PPC models focus primarily on the hospital setting, community-based PPC (CBPPC) programs are increasingly integral to the coordination, continuity, and provision of quality care. In this review, the authors examine the purpose, design, and infrastructure of CBPPC in the United States, highlighting eligibility criteria, optimal referral models to enhance early involvement, and fundamental tenets of CBPPC. This article also appraises the role of CBPPC in promoting family-centered care. This model strives to enhance shared decision making, facilitate seamless handoffs of care, maintain desired locations of care, and ease the end of life for children who die at home. The effect of legislation on the advent and evolution of CBPPC also is discussed, as is an assessment of the current status of state-specific CBPPC programs and barriers to implementation of CBPPC. Finally, strategies and resources for designing, implementing, and maintaining quality standards in CBPPC programs are reviewed.

Tender mercies: increasing access to hospice services for children with life-threatening conditions.

This article describes the initiation of the Children's Hospice and Palliative Care Coalition, an organization that emerged from the concern of two women for the unique needs of children with life-threatening conditions. The Coalition, based in California, was inspired to improve care for children with life-threatening conditions and their families by the 2002 Institute of Medicine report When Children Die:... (which was printed in 2003: ). Its most recent work has been to advance legislative initiatives to develop, implement, and evaluate a pilot project waiver to provide a federally funded pediatric care benefit.