Published literature
Achieving child-centred care for children and young people with life-limiting and life-threatening conditions-a qualitative interview studyCoombes L, Braybrook D, Roach A, Scott H, Harðardóttir D, Bristowe K, Ellis-Smith C, Bluebond-Langner M, Fraser L, Downing J, Farsides B, Murtagh F, Harding R · Eur J Pediatr · 2022
A randomized clinical trial of adolescents with HIV/AIDS: pediatric advance care planningLyon M, D'Angelo L, Dallas R, Hinds P, Garvie P, Wilkins M, Garcia A, Briggs L, Flynn P, Rana S, Cheng Y, Wang J · AIDS care · 2017
Bereaved parents' perspectives of factors influencing decision-making about place of end-of-life care for children with life-limiting, life-threatening conditions: an all-Ireland qualitative studyCrowe A, McCauley R, Corcoran Y, Reid J, Price J, Kiernan G, Courtney E, McConnell T, McNeilly P, Lambert V · BMC Palliat Care · 2025
Death and Cardiac Disease in Pediatric Hospitals and the Role of Subspecialty Palliative CareMoynihan K, Cashen K, Daughtrey H, Delgado-Corcoran C, Robinson L, Ting J, Flores S, Beshish A, Chlebowski M, Batsis M, Pryce P, Asfari A, Sznycer-Taub N, Karki K, Wakeham M, Ohman R, Shutes B, Narasimhulu S, Schramm J, Strelow F, Reddy R, Loomba R, Wong J, Werho D, Capone C, Schneider J, Leong K, Kulikowska A, Elgersma K, Prentice E, Reddy C, Leopold S, Mills K, Mastropietro C · Pediatrics · 2026
Early phase study enrollment in Canadian children with cancer near end of life: A retrospective cohort study from Cancer in Young People in CanadaHasan F, Widger K, Punnett A, Rapoport A, Morgenstern D, Cohen-Gogo S, Revon-Riviere G, Abbott L, Guilcher G, Fernandez C, Truong T, Deyell R, Sung L · Cancer · 2025
End-of-life decisions and practices for very preterm infants in the Wallonia-Brussels Federation of BelgiumAujoulat I, Henrard S, Charon A, Johansson A, Langhendries J, Mostaert A, Vermeylen D, Verellen G, Maton P, Van Overmeire B, Kalenga M, Broux I, Henrion E, Dussart A, Muller M, Cavatorta E, Marechal Y, Vanden Eijnden S, Lecart C, Haumont D, Van Herreweghe I, Vlieghe V, Debauche C, Flausch M, Sepulchre B · BMC Pediatrics · 2018
End-of-life practices among tertiary care PICUs in the United States: A multicenter studyMeert K, Keele L, Morrison W, Berg R, Dalton H, Newth C, Harrison R, Wessel D, Shanley T, Carcillo J, Clark A, Holubkov R, Jenkins T, Doctor A, Dean J, Pollack M · Pediatric Critical Care Medicine · 2015
Executive Summary of Society of Critical Care Medicine 2026 Guidelines on the Care and Management of Pediatric and Neonatal Intensive Care Patients at the End of LifeDerrington S, Broden Arciprete E, Lin M, Oczkowski S, Alladin A, Anani U, Borchik A, Collins C, Delgado-Corcoran C, Dickerman M, Harrod C, Henner N, Kon A, Lewis-Newby M, Lord B, Masters A, McCarthy S, Moynihan K, Munoz-Blanco S, Rissman L, Roberts K, Schlegel A, Schopen A, Siegel L, Swasey H, Wawrzynski S, Zorko D, DeCourcey D · Pediatric Critical Care Medicine · 2026
Guidance for Pediatric End-of-Life CareLinebarger J, Johnson V, Boss R, Section On H, Palliative M, Collura C, Humphrey L, Miller E, Williams C, Rholl E, Ajayi T, Lord B, McCarty C · Pediatrics · 2022
Guidance on forgoing life-sustaining medical treatmentWeise K, Okun A, Carter B, Christian C, Katz A, Laventhal N, MacAuley R, Moon M, Opel D, Statter M, Davies D, Dell M, Diekema D, Klipstein S, Elster N, Rivera F, Feudtner C, Boss R, Hauer J, Humphrey L, Klick J, Linebarger J, Parker S, Lord B, Imaizumi S, Guinn-Jones M, Flaherty E, Gavril A, Idzerda S, Laskey A, Legano L, Leventhal J, Fortson B, MacMillan H, Stedt E, Hurley T · Pediatrics · 2017
High-intensity end-of-life care among children, adolescents, and young adults with cancer who die in the hospital: A population-based study from the French national hospital databaseRevon-Riviere G, Pauly V, Baumstarck K, Bernard C, Andre N, Gentet J, Seyler C, Fond G, Orleans V, Michel G, Auquier P, Boyer L · Cancer. · 2019
How Can We Measure Quality of Dying, Death, and Quality of Care at the End-of-Life for Children and Young Adults? A Scoping Literature ReviewMayland C, Sunderland K, Taylor P, Powell P, Turner N, Cox V, Gillman C, Cooper M, Zeigler L, Flemming K, Fraser L · Palliative Medicine · 2022
Implementation of Polish guidelines on futile therapy protocols in pediatric intensive care units: a multicenter retrospective reviewDamps M, Rybojad B, Byrska-Maciejasz E, Gajda M, Mierzewska-Schmidt M, Bartkowska-Sniatkowska A, Zielinska M, Kubica-Cielinska A, Pagowska-Klimek I, Aftyka A, Wiktor L, Duda I · Scientific Reports · 2026
Intensity of Care at the End-of-Life in Pediatrics: A Single Center Analysis With Implications for Advanced Care Planning in Saudi ArabiaSadler K, Altarifi L, Callaghan S, Khan S, AlGhamdi K, Alayed T, Alhuthil R, Alshehri A, Altassan M, Aldhari M, Hussain H, Baragaa M · The American journal of hospice & palliative care · 2025
Life Duration of Pediatric Patients with Cancer Enrolled on Concurrent Hospice Care: A Retrospective Decedent StudyWeaver M, Jalfon R, Zeng E, Kalyanasundaram S, Kaye E, Salek M, Cowfer B, Johnson L, Mamer T, Mandrell B, Lindley L, Levine D · Journal of Palliative Medicine · 2026
Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available toolsMayland C, Sunderland K, Cooper M, Taylor P, Powell P, Zeigler L, Cox V, Gilman C, Turner N, Flemming K, Fraser L · Palliat Med · 2022
Navigating the shadows: medical professionals' values and perspectives on end-of-life care within pediatric intensive care units in CroatiaCurkovic M, Rubic F, Jozepovic A, Novak M, Filipovic-Grcic B, Mestrovic J, Lah Tomulic K, Peter B, Spoljar D, Grosek S, Jankovic S, Vukovic J, Kujundzic Tiljak M, Stajduhar A, Borovecki A · Frontiers in Pediatrics · 2024
Neonatal deaths: Prospective exploration of the causes and process of end-of-life decisionsHellmann J, Knighton R, Lee S, Shah P, Andrews W, Payot A, Bullied B, Chiu A, Dow K, Doctor S, Coughlin K, McMillan D, Ojah C, Peliowski A, Piedboeuf B, Riley P, Rouvinez-Bouali N, Dabowal T, Watts J, Osiovich H · Archives of Disease in Childhood: Fetal and Neonatal Edition · 2016
Noticing and responding to end-of-life suffering in the PICU: A co-designed conceptual framework for nursing practiceBroden Arciprete E, Michelson K, Feder S, Marr J, Al-Roub N, Gouda S, Jones A, Schopen A, Tapper A, Pasek T, Kelly R, Morris L, Olszewski A, Gallagher C, Taylor J, McCarthy S, Snaman J, Ananth P · Intensive & critical care nursing · 2026
Outcomes used to measure the clinical application of neonatal palliative and/or end-of-life care in neonatal settings: A systematic reviewGallagher K, Chant K, Parisi V, Patel M, Dunbar H, Paize F, Bertaud S, Agyepong A, Mancini A, Bluebond-Langner M, Marlow N · Archives of Disease in Childhood: Fetal and Neonatal Edition · 2025
Palliative and end-of-life care for children with diffuse intrinsic pontine glioma: Results from a London cohort study and international surveyVeldhuijzen Van Zanten S, Van Meerwijk C, Jansen M, Twisk J, Anderson A, Coombes L, Breen M, Hargrave O, Hemsley J, Craig F, Cruz O, Kaspers G, Van Vuurden D, Hargrave D · Neuro-Oncology · 2016
Patterns of paediatric end-of-life care: A chart review across different care settings in SwitzerlandZimmermann K, Cignacco E, Engberg S, Ramelet A, von der Weid N, Eskola K, Bergstraesser E, Ansari M, Aebi C, Baer R, Popovic M, Bernet V, Brazzola P, Bucher H, Buder R, Cagnazzo S, Dinten B, Dorsaz A, Elmer F, Enriquez R, Fahrni-Nater P, Finkbeiner G, Frey B, Frey U, Greiner J, Hassink R, Keller S, Kretschmar O, Kroell J, Laubscher B, Leibundgut K, Malaer R, Meyer A, Stuessi C, Nelle M, Neuhaus T, Niggli F, Perrenoud G, Pfammatter J, Plecko B, Rupf D, Sennhauser F, Stade C, Steinlin M, Stoffel L, Thomas K, Vonarburg C, von Vigier R, Wagner B, Wieland J, Wernz B · BMC Pediatrics · 2018
Perinatal Palliative Care Service: Developing a Comprehensive Care Package for Vulnerable Babies with Life Limiting Fetal ConditionsTewani K, Jayagobi P, Chandran S, Anand A, Thia E, Bhatia A, Bujal R, Khoo P, Quek B, Tagore S, Chua M · J Palliat Care · 2021
Quality Measures for End-of-Life in Children with Heart Disease: A Modified Delphi ApproachJohnston E, Tefera R, Nyamao T, Martinez I, Bhayani S, Mendoza E, Ananth P, Whittle S, Sadler E, James K, Moynihan K, Bhatia S, Asch S · Journal of Pain and Symptom Management · 2026
Quality of Care in the Last Two Years of Life for Children with Complex Chronic ConditionsBogetz J, Strub B, Bradford M, McGalliard J, Shipman K, Jeyte A, Patneaude A, Johnston E, Ananth P, Thienprayoon R, Rosenberg A · Journal of pain and symptom management · 2024
Race does not influence do-not-resuscitate status or the number or timing of end-of-life care discussions at a pediatric oncology referral centerBaker J, Rai S, Liu W, Srivastava K, Kane J, Zawistowski C, Burghen E, Gattuso J, West N, Althoff J, Funk A, Hinds P · Journal of Palliative Medicine · 2009
Regional perspectives on the coordination and delivery of paediatric end-of-life care in the UK: a qualitative studyPapworth A, Hackett J, Beresford B, Murtagh F, Weatherly H, Hinde S, Bedendo A, Walker G, Noyes J, Oddie S, Vasudevan C, Feltbower R, Phillips B, Hain R, Subramanian G, Haynes A, Fraser L · BMC Palliative Care · 2023
Retrieval-Augmented Generation (RAG) AI for End-of-Life Support in Pediatric HCT: Bridging Information Gaps for Patients and Caregivers on Palliative CareSiddiqui K, Al-Musa A, Alsaedi H, Ghemlas I, AlAnazi A, Al-Ahmari A, Ramiz S, Sadler K, Virk T, Ayas M, Khan S · Transplantation and Cellular Therapy · 2026
Social Determinants of Health And End-Of-Life Circumstances in A Quaternary Children's HospitalJamieson T, Liu J, Goldberg S, Ting J, Fox M, Rosenberg A, Heneghan C, Kwan S, Schicho F, Vitali S, Kheir J, Johnston E, Thiagarajan R, Weller E, Ward V, Moynihan K · Journal of pain and symptom management · 2026
Society of Critical Care Medicine 2026 Guidelines on the Care and Management of Pediatric and Neonatal Intensive Care Patients at the End of LifeDerrington S, Broden Arciprete E, Lin M, Oczkowski S, Alladin A, Anani U, Borchik A, Collins C, Delgado-Corcoran C, Dickerman M, Harrod C, Henner N, Kon A, Lewis-Newby M, Lord B, Masters A, McCarthy S, Moynihan K, Munoz-Blanco S, Rissman L, Roberts K, Schlegel A, Schopen A, Siegel L, Swasey H, Wawrzynski S, Zorko D, DeCourcey D · Pediatric Critical Care Medicine · 2026
The Bucharest international European Society for Organ Transplantation consensus on paediatric controlled donation after circulatory determination of deathWeiss M, Siebelink M, Cavazzoni E, Figini M, Kazzaz Y, Nadalin S, Nakagawa T, Scales A, Dominguez-Gil B, Oniscu G, Cillo U, Martin D · Transplant International · 2026
The Chameleon Project: A children's end of life care quality improvement projectWolff A, Dorsett C, Haynes S, Whitehouse W, Clements H, Griffin H, Chhaochharia A, Connolly A, Kelly N, Turnbull J, Deorukker S, Hill S, Batey N, Douglas E, Sheikh N, Bifani E, Lovegrove S, Webb K, Manning J · Developmental Medicine and Child Neurology · 2020
Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancerSansom-Daly U, Wiener L, Darlington A, Poort H, Rosenberg A, Weaver M, Schulte F, Anazodo A, Phillips C, Sue L, Herbert A, Mack J, Lindsay T, Evans H, Wakefield C, Global Adolescent and Young Adult Cancer Accord End-of-Life Study G · PLoS ONE [Electronic Resource] · 2022
Transfusion Use Among Children with Hematologic Malignancies Receiving Concurrent Hospice CareWeaver M, Jalfon R, Liang J, Mamer T, Johnson L, Kaye E, Salek M, Cowfer B, Superdock A, Li Y, Levine D · Journal of Pain & Symptom Management · 2026
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