Published literature
Center, Gestational Age, and Race Impact End-of-Life Care Practices at Regional Neonatal Intensive Care UnitsFry J, Matoba N, Datta A, DiGeronimo R, Coghill C, Natarajan G, Brozanski B, Leuthner S, Niehaus J, Schlegel A, Shah A, Zaniletti I, Bartman T, Murthy K, Sullivan K, Asselin J, Durand D, Dykes F, Evans J, Padula M, Pallotto E, Grover T, Piazza A, Reber K, Short B · Journal of Pediatrics. · 2019
Characterization of Death in Infants With Neonatal SeizuresLemmon M, Bonifacio S, Shellhaas R, Wusthoff C, Greenberg R, Soul J, Chang T, Chu C, Bates S, Massey S, Abend N, Cilio M, Glass H · Pediatric Neurology · 2020
Development and Implementation of a Survey to Assess Health-Care Provider's Competency, Attitudes, and Knowledge About Perinatal Palliative Care.Stenekes S, Penner J, Harlos M, Proulx M, Shepherd E, Liben S, Thompson G, MacConnell G, Gregoire M, Siden H · Journal of palliative care · 2018
Diversity of Parent Emotions and Physician Responses During End-of-Life ConversationsPrins S, Linn A, van Kaam A, van de Loo M, van Woensel J, van Heerde M, Dijk P, Kneyber M, de Hoog M, Simons S, Akkermans A, Smets E, de Vos M · Pediatrics · 2023
Effectiveness of an Interdisciplinary Pediatric and Neonatal Palliative Care Simulation Program in IndiaFlippo R, Garner S, Peck J, Rosonet L, Dorion M, Sudia T, Prater L, Ke W, Siew A, Maganth M, Johnson S · Clinical Simulation In Nursing · 2024
End of life care for infants, children and young people (ENHANCE): Protocol for a mixed methods evaluation of current practice in the United KingdomPapworth 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 · NIHR open research · 2022
End of life care in paediatric settings: UK national surveyBedendo A, Papworth A, Beresford B, Phillips B, Vasudevan C, Lake Walker G, Weatherly H, Feltbower R, Hinde S, Hewitt C, Murtagh F, Noyes J, Hackett J, Hain R, Oddie S, Subramanian G, Haynes A, Fraser L · BMJ supportive & palliative care · 2025
Estimating national prevalence of life-limiting conditions amongst infants, children, and adolescents using administrative hospital data in the absence of a unique health identifier; evidence from IrelandSmith S, Delamere T, Fraser L, Murphy O, May P, McElligott F, Devins M, Horne T, Rabbitte M, Guerin S, O'Hara S, Dillon M, Balfe J · BMC Pediatrics · 2026
Ethical decision-making climate, moral distress, and intention to leave among ICU professionals in a tertiary academic hospital centerSilverman H, Wilson T, Tisherman S, Kheirbek R, Mukherjee T, Tabatabai A, McQuillan K, Hausladen R, Davis-Gilbert M, Cho E, Bouchard K, Dove S, Landon J, Zimmer M · BMC Med Ethics · 2022
Ethics and end-of-life in pediatric and neonatal ICUs: a systematic review of recommendationsŠpoljar D, Janković S, Vrkić D, McNamara G, Ćurković M, Novak M, Filipović-Grčić B, Grosek S, Gastmans C, Gordijn B, Borovečki A · BMC Palliative Care · 2025
Experiencing acute genomic care: perspectives from parents in the neonatal and paediatric intensive care units towards rapid genomic sequencingMackley M, Dickson M, Szuto A, Anderson J, Chitayat D, Hayeems R, Mendoza-Londono R, Ng E, Offringa M, Wang Y, Ly L, Chad L · European Journal of Human Genetics · 2026
Exploring the impact of healthcare workers communication with women who have experienced stillbirth in Malawi, Tanzania and Zambia. A grounded theory studyActis Danna V, Lavender T, Laisser R, Chimwaza A, Chisuse I, Kasengele C, Kimaro D, Kuzenza F, Lyangenda K, Mwamadi M, Shayo H, Tuwele K, Wakasiaka S, Bedwell C · Women & Birth · 2023
Facilitating Milk Donation in the Context of Perinatal Palliative CareCole J, Schwarz J, Farmer M, Coursey A, Duren S, Rowlson M, Prince J, Oser M, Spatz D · Journal of obstetric, gynecologic, and neonatal nursing : JOGNN · 2018
Future roles of artificial intelligence in early pain management of newbornsSalekin M, Mouton P, Zamzmi G, Patel R, Goldgof D, Kneusel M, Elkins S, Murray E, Coughlin M, Maguire D, Ho T, Sun Y · Paediatric and Neonatal Pain
Guidelines regarding ineffective maintenance of organ functions (futile therapy) in paediatric intensive care unitsBartkowska-Śniatkowska A, Byrska-Maciejasz E, Cettler M, Damps M, Jarosz K, Mierzewska-Schmidt M, Migdał M, Ożóg-Zabolska I, Piotrowski A, Rawicz M, Świder M, Tałałaj M, Zielińska M · Anaesthesiol Intensive Ther · 2021
How doctors manage conflicts with families of critically ill patients during conversations about end-of-life decisions in neonatal, pediatric, and adult intensive careSpijkers A, Akkermans A, Smets E, Schultz M, Cherpanath T, van Woensel J, van Heerde M, van Kaam A, van de Loo M, Willems D, de Vos M · Intensive Care Medicine · 2022
Identifying Key Areas to Improve Care for Families Around the Time of Stillbirth or Neonatal Death: A Survey of Maternity Services in AustraliaLoughnan S, Horey D, Wojcieszek A, Andrews C, Gautam R, Carty M, Ellwood D, Forbes M, Gordon A, Jennings B, Lohan A, Laporte J, Seeho S, Shand A, Boyle F, Flenady V · Australian & New Zealand Journal of Obstetrics & Gynaecology · 2026
Impact of Palliative Care on Psychosocial and Spiritual Outcomes in the Neonatal Intensive Care UnitLin M, Horner C, Butler K, Bosworth O, Kiernan T, Nelson J, Pierce K, Dore D, Eison D, Kazmi S, Zawistowski C · Journal of Pain and Symptom Management · 2025
Interpersonal relationships after prenatal diagnosis of congenital heart disease: Social stressors and supportsMarshall E, Gramszlo C, Perez Ramirez A, Kazak A, Shillingford A, Ortinau C, Kelly S, Kasparian N, Edwards L, Divanovic A, Davis J, Butler S, Braley K, Riegel E, Sood E · Journal of Perinatology · 2025
Lactation Support as a Proxy Measure of Family-Centered Care Quality in Neonates with Life-Limiting Conditions-A Comparative StudyBrito S, Williams A, Fox J, Mohammed T, Chahin N, McCarthy K, Nubayaat L, Nunlist S, Brannon M, Xu J, Hendricks-Munoz K · Children · 2023
Living with Loss: study protocol for a randomized controlled trial evaluating an internet-based perinatal bereavement program for parents following stillbirth and neonatal deathLoughnan S, Lancaster A, Crocker S, Astell C, Griffin A, Wojcieszek A, Boyle F, Ellwood D, Dean J, Horey D, Callander E, Jackson C, Seeho S, Shand A, Flenady V · Journal of Loss & Trauma · 2025
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
Neonatal nurses' perceptions of providing palliative care in neonatal intensive care units in Saudi ArabiaAl-Shehri H, Alotaibi A, Alanazi B, Alshehri A, Alajlan A, Alsulami M, Alshehri R, Alshehri F, Alshammari R, Alrashed K, Alhumaidan R, Al-Ghadeer A, Almutairi A, Alzayed A · Medicine · 2026
Not there yet: Pediatric palliative care in Canada 2002-2012Widger K, Davies D, Dauost L, Liben S, Rapoport A, Gregoire M, Vadeboncoeur C, Stenekes S, Cyr C, Sarpal A, Roy H, Hodgson-Viden H, Robertson M, Siden H · Journal of Pain and Symptom Management · 2016
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
Parents' experiences of care offered after stillbirth: An international online survey of high and middle-income countriesHorey D, Boyle F, Cassidy J, Cassidy P, Erwich J, Gold K, Gross M, Heazell A, Leisher S, Murphy M, Ravaldi C, Siassakos D, Storey C, Vannacci A, Wojcieszek A, Flenady V · Birth (Berkeley, Calif.) · 2021
Perinatal palliative careMartín-Ancel A, Pérez-Muñuzuri A, González-Pacheco N, Boix H, Espinosa Fernández M, Sánchez-Redondo M, Cernada M, Couce M · An Pediatr (Engl Ed) · 2022
Perinatal palliative care in low- and middle-income countries: a scoping reviewRent S, Titchiner D, Rholl E, Lyle A, Diego E, North K, Rahiem S, Garmon A, Gaffur R, Shayo A, Diez Recinos A, Lemmon M, Docherty S · Annals of palliative medicine · 2024
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
Pictures as mementos after perinatal death: a case studyJesus R, Benute G, Bertolassi N, Barbosa T, Bolibio R, Figueiredo F, Setubal M, Gibelli M, Gomes A, Ferreira R, Francisco R, Bernardes L · International Journal of Palliative Nursing · 2022
Project Baby Panther -assessment of the implementation of the rapid Whole Genome Sequencing as routine diagnostic toll for critically ill neonates and children in AustriaZaminer M, Schreiner E, Bierbaumer S, Blatterer J, Hammer S, Kaufmann L, Kuhberger S, Tichy H, Wagner-Skacel J, Holter M, Eber E, Wagner K, Verheyen S · European Journal of Human Genetics · 2025
Prospective, phenotype-driven selection of critically ill neonates for rapid exome sequencing is associated with high diagnostic yieldGubbels C, VanNoy G, Madden J, Copenheaver D, Yang S, Wojcik M, Gold N, Genetti C, Stoler J, Parad R, Roumiantsev S, Bodamer O, Beggs A, Juusola J, Agrawal P, Yu T · Genet Med · 2020
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
Survival and causes of death in extremely preterm infants in the Netherlandsvan Beek P, Groenendaal F, Broeders L, Dijk P, Dijkman K, van den Dungen F, van Heijst A, van Hillegersberg J, Kornelisse R, Onland W, Schuerman F, van Westering-Kroon E, Witlox R, Andriessen P · Arch Dis Child Fetal Neonatal Ed · 2020
Trends and Causes of Neonatal Mortality in Canadian Neonatal Intensive Care UnitsStritzke A, Bhullar H, Ruth C, Lodha A, Beltempo M, Shah P, Pillay T, Wong J, Stavel M, Sherlock R, Mehrem A, Toye J, Ting J, Fajardo C, Harabor A, Strueby L, Seshia M, Louis D, Ruth C, Yi A, Mukerji A, Da Silva O, Augustine S, Lee K, Ng E, Lemyre B, Bitar E, Bizgu V, Nouraeyan N, Barrington K, Lapointe A, Ethier G, Drolet C, Zeid M, St-Hilaire M, Bertelle V, Masse E, Costa P, Makary H, Aziz A, de Carvalho Nunes G, Alburaki W, Hudson J, Afifi J, Kajetanowicz A, Chang C, Piedboeuf B · Journal of Pediatrics · 2026
Using the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) in a community setting: Does it facilitate best interests decision-making?Eli K, Bernstein C, Harlock J, Huxley C, Walsh J, Blanchard H, Hawkes C, Perkins G, Turner C, Griffiths F, Slowther A · Journal of Medical Ethics: Journal of the Institute of Medical Ethics · 2025
Withholding or withdrawing life-sustaining treatment in extremely low gestational age neonatesDworetz A, Natarajan G, Langer J, Kinlaw K, James J, Bidegain M, Das A, Poindexter B, Bell E, Cotten C, Kirpalani H, Shankaran S, Stoll B · Archives of disease in childhood. Fetal and neonatal edition. · 2020
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