Published literature
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
Barriers and facilitators for parents in end-of-life decision-making for neonates at the Neonatal Intensive Care Unit: A qualitative studyPiette V, Dombrecht L, Deliens L, Cools F, Chambaere K, Goossens L, Naulaers G, Laroche S, Cornette L, Bekaert E, Decoster P, Beernaert K, Cohen J · Palliat Med · 2022
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
Caregiver Values and Preferences Related to Surgical Decision-making for Children with Medical ComplexityLin J, Devereaux T, Simon T, Kaphingst K, Zhu A, Narayanan U, Berry A, Eppich K, Stoddard G, Smith J, Andras L, Heflin J, Keenan H, Asch S, Fagerlin A · The Journal of pediatrics · 2024
Decision-making at the limit of viability: Differing perceptions and opinions between neonatal physicians and nursesBucher H, Klein S, Hendriks M, Baumann-Holzle R, Berger T, Streuli J, Fauchere J, Philipp M, Roland N, Renate I, Mathias N, Liliane S, Brigitte S, Kai R, Riccardo P, Matthias R, Magali C, Ulrike S, Gudrun J, Ruth D, Jean-Claude F, Barbara D · BMC Pediatrics · 2018
Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions: a systematic integrative reviewCrowe A, Hurley F, Kiernan G, Kerr H, Corcoran Y, Price J, Reid J, Courtney E, McConnell T, McNeilly P, Lambert V · BMC palliative care · 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
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
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
How doctors actually (do not) involve families in decisions to continue or discontinue life-sustaining treatment in neonatal, pediatric, and adult intensive care: A qualitative studyAkkermans A, Lamerichs J, Schultz M, Cherpanath T, van Woensel J, van Heerde M, van Kaam A, van de Loo M, Stiggelbout A, Smets E, de Vos M · Palliative Medicine. · 2021
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
Knowledge Is Power: Benefits, Risks, Hopes, and Decision-Making Reported by Parents Consenting to Next-Generation Sequencing for Children and Adolescents with CancerMandrell B, Gattuso J, Pritchard M, Caples M, Howard Sharp K, Harrison L, Ouma A, Valdez J, Johnson L, Nichols K · Seminars in Oncology Nursing · 2021
Mixed-method examination of factors associated with adolescent decision-making and involvement in care in the context of advanced cancerSutherland-Foggio M, Olsavsky A, Skeens M, Nahata L, Hill K, Schaefer M, Himelhoch A, Kenney A, Humphrey L, Olshefski R, Gerhardt C · Palliative & supportive care · 2024
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
Navigator-Based Intervention to Support Communication in the Pediatric Intensive Care Unit: A Pilot StudyMichelson K, Charleston E, Aniciete D, Sorce L, Fragen P, Persell S, Ciolino J, Clayman M, Rychlik K, Jones V, Spadino P, Malakooti M, Brown M, White D · Am J Crit Care · 2020
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
Neonatologists and neonatal nurses have positive attitudes towards perinatal end-of-life decisions, a nationwide surveyDombrecht L, Deliens L, Chambaere K, Baes S, Cools F, Goossens L, Naulaers G, Roets E, Piette V, Cohen J, Beernaert K · Acta Paediatr · 2020
Parents' decision-making for their foetus or neonate with a severe congenital heart defectDelaney R, Pinto N, Ozanne E, Brown H, Stark L, Watt M, Karasawa M, Patel A, Donofrio M, Steltzer M, Miller S, Zickmund S, Fagerlin A · Cardiol Young · 2022
Psychological support in end-of-life decision-making in neonatal intensive care units: Full population survey among neonatologists and neonatal nursesDombrecht L, Cohen J, Cools F, Deliens L, Goossens L, Naulaers G, Beernaert K, Chambaere K, Laroche S, Theyskens C, Vandeputte C, Cornette L, Van de Broek H · Palliative Medicine. · 2019
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
Regret and unfinished business in parents bereaved by cancer: A mixed methods studyLichtenthal W, Roberts K, Catarozoli C, Schofield E, Holland J, Fogarty J, Coats T, Barakat L, Baker J, Brinkman T, Neimeyer R, Prigerson H, Zaider T, Breitbart W, Wiener L · Palliative Medicine · 2020
Treatment Decision Making at Diagnosis for Children Presenting With Advanced Cancer in Low- and Middle-Income CountriesSalek M, Caceres-Serrano A, Canedo J, Fuentes L, Mehler S, Rule A, Zeal J, Rodriguez-Galindo C, Graetz D, Bhakta N, Kaye E, Group C, Baker J, Dolendo M, Figueredo D, Force L, Friedrich P, Geriga F, Gunasekera S, Hunleth J, Kizyma R, Maradiege E, Kim Nguyen H, Nzamu I, Raza M, Rustamova K, Sari N, Wise P · JCO Global Oncology · 2026
“We decide according to the protocol”: Humanitarian Healthcare Workers’ Moral Experiences of Palliative Care-Related Decision-Making in Cox’s Bazar, BangladeshYantzi R, Hadiuzzaman M, Gupta P, Lamrous A, Richardson K, Pringle J, Schwartz L, Hossain P, Kizito D, Burza S · Prehospital & Disaster Medicine Cambridge University Press May2023 · 2023
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