1 40 1 Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource June 2023 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month June 2022 List URL Address <a href="https://journals.sagepub.com/doi/10.1177/10499091231169497">https://journals.sagepub.com/doi/10.1177/10499091231169497</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Intractable Feeding Intolerance in Children With Severe Neurological Impairment: A Retrospective Case Review of Nine Children Known to a Pediatric Palliative Care Service Publisher An entity responsible for making the resource available American Journal of Hospice and Palliative Care Date A point or period of time associated with an event in the lifecycle of the resource 2023 Subject The topic of the resource Child; Palliative Care; child; article; female; human; male; preschool child; palliative therapy; hospice; clinical article; intensive care; school child; documentation; Only Child; ethics; patient referral; adolescent; infant; stomach tube; deterioration; retrospective study; drug combination; conversation; nomenclature; neurologic disease; feeding difficulty; parenteral nutrition; case study; enteric feeding; neurodisability; digestive system function disorder Creator An entity primarily responsible for making the resource Katz NT; Cooper MS; Kularatne A; Prebble A; McGrath KH; McCallum Z; Antolovich G; Sutherland I; Sacks BH Description An account of the resource BACKGROUND: Intractable feeding intolerance in children with severe neurological impairment (SNI) is poorly defined and understood. <br/>OBJECTIVE(S): (1) To describe 9 children with SNI, where intractable feeding intolerance was thought to be a contributor to their deterioration or death. (2) To consider terminology to describe the severe end of the spectrum of feeding difficulties in children with SNI. <br/>RESULT(S): Mean age at death was 10.3 years (range: 5 - 15.6), and median time from palliative care referral to death was 3.1 months. Location of death was home (n = 3), hospice (n = 1), and hospital (n = 5) with 1 death in intensive care. Gastrointestinal "failure" or "dysfunction" were documented for 7 children, (median time between documentation and death was 3.9 months (range: .1 to 13.1)). All children were fed via a gastrostomy tube during their life (median age of insertion 2.5 years (range: 1.2 to 6.8 years)), and 7 via the jejunal route (median age of insertion 9.2 years (range 2.4 to 14.7 years)). Children lived a median of 9 percent of their lives after jejunal tube feeding was commenced. No child had home-based parenteral nutrition. Multiple symptom management medications were required. <br/>CONCLUSION(S): 'Intractable feeding intolerance' describes a clinical crossroads in a child's life where there is an opportunity to consider the appropriateness of further interventions. Further work should explore predictors of intractable feeding intolerance and the delicate balance between cause or contributor to death. The importance of clinician-family prognostic conversations and goal-concordant care both during life and in the terminal phase is highlighted. Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). Identifier An unambiguous reference to the resource within a given context <a href="https://journals.sagepub.com/doi/10.1177/10499091231169497">10.1177/10499091231169497</a> 2023 Adolescent American Journal Of Hospice And Palliative Care Antolovich G Article Case Study Child Clinical Article Conversation Cooper MS Deterioration digestive system function disorder Documentation drug combination enteric feeding Ethics feeding difficulty Female Hospice Human Infant Intensive Care June 2022 List Katz NT Kularatne A Male McCallum Z McGrath KH Neurodisability Neurologic Disease Nomenclature Only Child Palliative Care Palliative Therapy Parenteral Nutrition Patient Referral Prebble A Preschool Child Retrospective Study Sacks BH School Child stomach tube Sutherland I