title: A Parent's Journey: Incorporating Principles of Palliative Care into Practice for Children with Chronic Neurologic Diseases.
abstract: Rather than in conflict or in competition with the curative model of care, pediatric palliative care is a complementary and transdisciplinary approach used to optimize medical care for children with complex medical conditions. It provides care to the whole child, including physical, mental, and spiritual dimensions, in addition to support for the family. Through the voice of a parent, the following case-based discussion demonstrates how the fundamentals of palliative care medicine, when instituted early in the course of disease, can assist parents and families with shared medical decision making, ultimately improving the quality of life for children with life-limiting illnesses. Pediatric neurologists, as subspecialists who provide medical care for children with chronic and complex conditions, should consider invoking the principles of palliative care early in the course of a disease process, either through applying general facets or, if available, through consultation with a specialty palliative care service.
authors.affiliation: Department of Pediatrics, Division of Critical Care Medicine, University of Washington School of Medicine, Seattle, WA; Department of Pediatrics, Seattle Children's Hospital, Seattle, WA.
authors.forename: Allyson
authors.initials: A
authors.lastname: Brown
authors.affiliation: Department of Pediatrics, Seattle Children's Hospital, Seattle, WA; Treuman Katz Center for Pediatric Bioethics, University of Washington School of Medicine, Seattle, WA. Electronic address: jonna.clark@seattlechildrens.org.
authors.forename: Jonna D
authors.initials: JD
authors.lastname: Clark
mesh_terms: D002648:Child; D002908:Chronic Disease; D004827:Epilepsy / Q000628:therapy; D005260:Female; D006801:Humans; D009422:Nervous System Diseases / Q000523:psychology / Q000628:therapy*; D010166:Palliative Care / Q000379:methods*; D010290:Parents / Q000523:psychology*; D010372:Pediatrics