title: Best practices for pediatric palliative cancer care: a primer for clinical providers.
abstract: Cancer is the leading cause of disease-related death in children and adolescents. Pediatric patients with cancer suffer greatly at the end of life. However, palliative care interventions can reduce suffering and significantly improve the care of these patients and their families. A large percentage of pediatric deaths occur outside of the hospital setting where pediatric palliative resources may not be readily available. Patients in the home setting may be cared for by community hospice programs, which are typically staffed for adult populations. Increasingly, nonpediatric providers are asked to provide palliative care for children and adolescents at the end of life, yet they receive little formal training in this area. This review focuses on the principles of best practice in the provision of palliative care for children and adolescents with cancer. Our intent is to aid clinical providers in delivering optimal care to this patient population. Topics unique to pediatric palliative care that are addressed include: providing pain and symptom management in the broad pediatric range from neonate to adolescent; caring for and interacting with developmentally distinct groups; engaging in shared decision making with parents and adolescents; providing accommodations for prognoses that are often more uncertain than in adult patients; and delivering concurrent disease-directed therapy with palliative care.
authors.affiliation: Department of Oncology, Division of Quality of Life and Palliative Care, St Jude Children's Research Hospital, Memphis, Tennessee 38105, USA.
authors.forename: Deena
authors.initials: D
authors.lastname: Levine
authors.affiliation: Solid Tumor Division and International Outreach Program, St Jude Children's Research Hospital, Memphis, Tennessee 38105, USA.
authors.forename: Catherine G
authors.initials: CG
authors.lastname: Lam
authors.affiliation: Department of Pediatrics, University of Tennessee Health Science Center, Memphis, USA.
authors.forename: Melody J
authors.initials: MJ
authors.lastname: Cunningham
authors.affiliation: Department of Social Work, Children's Hospitals and Clinics of Minnesota, USA.
authors.forename: Stacy
authors.initials: S
authors.lastname: Remke
authors.affiliation: Pain Medicine, Palliative Care and Integrative Medicine, Children's Hospitals and Clinics of Minnesota, Department of Social Work, Minneapolis, USA.
authors.forename: Jody
authors.initials: J
authors.lastname: Chrastek
authors.affiliation: Department of Palliative Care, Children's Healthcare of Atlanta, Georgia, USA.
authors.forename: Jeffrey
authors.initials: J
authors.lastname: Klick
authors.affiliation: Department of Pediatric Palliative Care, University of Vermont College of Medicine, Burlington, USA.
authors.forename: Robert
authors.initials: R
authors.lastname: Macauley
authors.affiliation: Department of Oncology, Division of Quality of Life and Palliative Care, St Jude Children's Research Hospital, Memphis, Tennessee 38105, USA.
authors.forename: Justin N
authors.initials: JN
authors.lastname: Baker
mesh_terms: D000293:Adolescent; D002648:Child; D004992:Ethics, Medical; D006282:Health Personnel; D006801:Humans; D009369:Neoplasms / Q000628:therapy*; D010166:Palliative Care