Rogers Textbook of Pediatric Intensive Care

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Chapter 14: Palliative and End-of-Life Care in the Pediatric Intensive Care Unit

with advanced lung cancer receiving care in the Veterans Health Administration. JAMA Oncol . 2019;5(12):1702-1709. 22. Morrison WE, Gauvin F, Johnson E, Hwang J. Integrating pal liative care into the ICU: from core competency to consultative expertise. Pediatr Crit Care Med . 2018;19(8S suppl 2):S86-S91. 23. Devictor DJ, Latour JM. Forgoing life support: how the decision is made in European pediatric intensive care units. Intensive Care Med . 2011;37(11):1881-1887. 24. Devictor D, Latour JM, Tissieres P. Forgoing life-sustaining or death-prolonging therapy in the pediatric ICU. Pediatr Clin North Am . 2008;55(3):791-804, xiii. 25. Lee KJ, Tieves K, Scanlon MC. Alterations in end-of-life support in the pediatric intensive care unit. Pediatrics . 2010;126(4):e859-e864. 26. Feudtner C, Hexem KR, Rourke MT. Epidemiology and the care of children with complex conditions. In: Wolfe J, Hinds PS, Sourkes BM, eds. Textbook of Interdisciplinary Pediatric Pallia tive Care . Elsevier; 2011:7-18. 27. Grossoehme DH, Humphrey L, Friebert S, et al. Patters of hos pice and home-based palliative care in children: an Ohio pedi atric palliative care and end-of-life network study. J Pediatr . 2020;225:152-156. 28. Nelson H, Mott S, Kleinman ME, Goldstein RD. Parents’ experi ences of pediatric palliative transports: a qualitative case series. J Pain Symptom Manage . 2015;50(3):375-380. 29. Menon AP, Mok YH, Loh LE, Lee JH. Pediatric palliative trans port in critically ill children: a single center’s experience and par ents’ perspectives. J Pediatr Intensive Care . 2020;9(2):99-105. 30. Needle JS. Home extubation by a pediatric critical care team: providing a compassionate death outside the pediatric intensive care unit. Pediatr Crit Care Med . 2010;11(3):401-403. 31. Zwerdling T, Hamann KC, Kon AA. Home pediatric compas sionate extubation: bridging intensive and palliative care. Am J Hosp Palliat Care . 2006;23(3):224-228. 32. Berry JG, Hall M, Dumas H, et al. Pediatric hospital discharges to home health and post acute facility care: a national study. JAMA Pediatr . 2016;170(4):326-333. 33. Harris-Kojetin L, Sengupta M, Lendon JP, et al. Long-term care providers and services users in the United States, 2015-2016. Vi tal Health Stat . 2019;3(43). 34. Singer PA, Bowman KW. Quality end-of-life care: a global per spective. BMC Palliat Care . 2002;1(1):4. 35. Arias-Casais N, Garralda E, Pons JJ, et al. Mapping pediatric palliative care development in the WHO-European region: chil dren living in low-to-middle-income countries are less likely to access it. J Pain Symptom Manage . 2020;60:746-753. 36. Miller EG, Laragione G, Kang TI, et al. Concurrent care for the medically complex child: lessons of implementation. J Palliat Med . 2012;15(11):1281-1283. 37. Kang TI, Feudtner C. Advances in pediatric palliative medicine in the United States. Prog Palliat Care . 2012;20(6):331-336. 38. O’Keefe S, Maddux AB, Bennett KS, et al. Variation in pediat ric palliative care allocation among critically ill children in the United States. Pediatr Crit Care Med . 2021;22(5):462-473. 39. Ragsdale L, Zhong W, Morrison W, et al. Pediatric exposure to opioid and sedation medications during terminal hospitalizations in the United States, 2007-2011. J Pediatr . 2015;166:587-593. 40. Morrison W, Kang T. Judging the quality of mercy: drawing a line between palliation and euthanasia. Pediatrics . 2014;133(suppl 1):S31-S36. 41. Chan JD, Treece PD, Engelberg RA, et al. Narcotic and benzo diazepine use after withdrawal of life support: association with time to death? Chest. 2004;126(1):286-293. 42. Zernikow B, Michel E, Craig F, et al. Pediatric palliative care: use of opioids for the management of pain. Paediatr Drugs . 2009;11(2):129-151. 43. Friedrichsdorf SJ, Kang TI. The management of pain in chil dren with life-limiting illnesses. Pediatr Clin North Am . 2007;54(5):645-672.

References 1. Murphy SL, Mathews TJ, Martin JA, et al. Annual summary of vital statistics: 2013-2014. Pediatrics . 2017;139(6):e20163239. 2. Global Health Observatory Data Repository. https://platform .who.int/mortality/themes/theme-details/MDB/all-causes 3. Hain R, Heckford E, McCulloch R. Paediatric palliative medicine in the UK: past, present, future. Arch Dis Child . 2012;97(4):381-384. 4. Feudtner C, Christakis DA, Zimmerman FJ, et al. Characteristics of deaths occurring in children’s hospitals: implications for sup portive care services. Pediatrics . 2002;109(5):887-893. 5. Carter BS, Howenstein M, Gilmer MJ, et al. Circumstances sur rounding the deaths of hospitalized children: opportunities for pediatric palliative care. Pediatrics . 2004;114(3):e361-e366. 6. Håkanson C, Öhlén J, Kreicbergs U, et al. Place of death of chil dren with complex chronic conditions: cross-national study of 11 countries. Eur J Pediatr . 2017;176:327-335. 7. Edwards JD, Houtrow AJ, Vasilevskis EE, et al. Chronic condi tions among children admitted to U.S. pediatric intensive care units: their prevalence and impact on risk for mortality and pro longed length of stay. Crit Care Med . 2012;40(7):2196-2203. 8. Namachivayam P, Shann F, Shekerdemian L, et al. Three decades of pediatric intensive care: who was admitted, what happened in intensive care, and what happened afterward. Pediatr Crit Care Med . 2010;11(5):549-555. 9. Miller RL, Gebremariam A, Odetola FO. Pediatric high-impact conditions in the United States: retrospective analysis of hos pitalizations and associated resource use. BMC Pediatr . 2012; 12:61. 10. Burns JP, Sellers DE, Meyer EC, et al. Epidemiology of death in the PICU at five U.S. teaching hospitals. Crit Care Med . 2014;42(9):2101-2108. 11. Meert KL, Keele L, Morrison WE, et al. End-of-life prac tices among tertiary care pediatric intensive care units in the U.S.: a multicenter study. Pediatr Crit Care Med . 2015;16(7): e231-e238. 12. Trowbridge A, Walter JK, McConathey E, et al. Modes of death within a children’s hospital. Pediatrics . 2018;142(4):e20174182. 13. DeCourcey DD, Silverman M, Oladunjoye A, et al. Pat terns of care at the end of life for children and young adults with life-threatening complex chronic conditions. J Pediatr . 2018;193:196-203. 14. Piva J. Modes of death and the dying process in Brazilian PICU over the last 30 years: personal reflections. Pediatr Crit Care Med . 2018;19(8S suppl 2):S59-S60. 15. Miller SC, Weitzen S, Kinzbrunner B. Factors associated with the high prevalence of short hospice stays. J Palliat Med . 2003;6(5):725-736. 16. Bao D, Feichtinger L, Andrews G, et al. Charting the territory: end-of-life trajectories for children with complex neurological, metabolic, and chromosomal conditions. J Pain Symptom Man age . 2021;61(3):449-455. 17. Thrane SE, Maurer SH, Cohen SM, et al. Pediatric palliative care: a five-year retrospective chart review study. J Palliat Med . 2017;20(10):1104-1111. 18. Feudtner C, Kang TI, Hexem KR, et al. Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics . 2011;127(6):1094-1101. 19. Rapoport A, Beaune L, Weingarten K, et al. Living life to the fullest: early integration of palliative care into the lives of chil dren with chronic complex conditions. Curr Pediatr Rev . 2012; 8(2):152-165. 20. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med . 2010;363(8):733-742. 21. Sullivan DR, Bhan B, Lapidus JA, et al. Association of early pal liative care use with survival and place of death among patients

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