title: Pediatric palliative care in the community.
abstract: 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.
authors.affiliation: Dual Fellow in Pediatric Hematology/Oncology and Hospice and Palliative Medicine, Department of Oncology, Division of Quality of Life and Palliative Care, St. Jude Children's Research Hospital, Memphis, TN.
authors.forename: Erica C
authors.initials: EC
authors.lastname: Kaye
authors.affiliation: Fellow in Hospice and Palliative Medicine, Haslinger Division of Pediatric Palliative Care, Akron Children's Hospital, Akron, OH.
authors.forename: Jared
authors.initials: J
authors.lastname: Rubenstein
authors.affiliation: Assistant Member, Division of Quality of Life and Palliative Care, St. Jude Children's Research Hospital, Memphis, TN.
authors.forename: Deena
authors.initials: D
authors.lastname: Levine
authors.affiliation: Chief, Division of Quality of Life and Palliative Care, Director, Hematology/Oncology and Hospice and Palliative Medicine Fellowship Programs, St. Jude Children's Research Hospital, Memphis, TN.
authors.forename: Justin N
authors.initials: JN
authors.lastname: Baker
authors.affiliation: Executive Director, Co-Founder, Children's Hospice and Palliative Care Coalition, Salinas, CA.
authors.forename: Devon
authors.initials: D
authors.lastname: Dabbs
authors.affiliation: Director, Pediatric Palliative Care Program, Haslinger Division of Pediatric Palliative Care, Akron Children's Hospital, Akron, OH.
authors.forename: Sarah E
authors.initials: SE
authors.lastname: Friebert
mesh_terms: D002648:Child; D003153:Community Health Services / Q000458:organization & administration*; D003266:Continuity of Patient Care / Q000458:organization & administration*; D003657:Decision Making; D006699:Home Care Services / Q000458:organization & administration; D006801:Humans; D010166:Palliative Care / Q000458:organization & administration*; D010372:Pediatrics / Q000458:organization & administration*; D013727:Terminal Care / Q000458:organization & administration; D014481:United States
keywords: care; communication; community; end of life; home; hospice; palliative; pediatric; quality of life