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Palliative Care for Special Populations: Pediatrics

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Palliative Care in Hematologic Malignancies and Serious Blood Disorders

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Abstract

Among patients with hematologic malignancies and serious blood disorders, the pediatric population represents a unique subset with distinct palliative care needs across physical, psychological, social, and spiritual domains. Palliative care integration for pediatric patients, including adolescent and young adult (AYA) patients, necessitates an understanding of specific physiological, developmental, and relational factors for the child and their family unit as a whole. Holistic care for pediatric patients encompasses high-quality and individualized communication, symptom management, goal-directed care, and interdisciplinary support across the illness course. This chapter will review palliative care provision for pediatric patients with hematologic malignancies and serious blood disorders, focusing on the child and family’s physiologic, developmental, psychosocial, and spiritual care needs across the illness trajectory and into bereavement. The importance of comprehensive parent, sibling and extended family care, community-based support, and the role of palliative care resources and services for pediatric patients and families across healthcare and home-based settings will also be reviewed.

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References

  1. Feudtner C, Kang TI, Hexem KR, et al. Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics. 2011;127(6):1094–101. https://doi.org/10.1542/peds.2010-3225.

    Article  PubMed  Google Scholar 

  2. Howlader NNA, Krapcho M, Miller D, Brest A, Yu M, Ruhl J, Tatalovich Z, Mariotto A, Lewis DR, Chen HS, Feuer EJ, Cronin KA. SEER Cancer Statistics Review, 1975–2017. National Cancer Institute; 2019; https://seer.cancer.gov/csr/1975_2017.

    Google Scholar 

  3. Snaman JM, Kaye EC, Lu JJ, Sykes A, Baker JN. Palliative care involvement is associated with less intensive end-of-life Care in Adolescent and Young Adult Oncology Patients. J Palliat Med. 2017;20(5):509–16. https://doi.org/10.1089/jpm.2016.0451.

    Article  PubMed  Google Scholar 

  4. Benjamin L. Pain Management in Sickle Cell Disease: palliative care begins at birth? Hematology. 2008;2008(1):466–74. https://doi.org/10.1182/asheducation-2008.1.466.

    Article  Google Scholar 

  5. Weaver MS, Heinze KE, Kelly KP, et al. Palliative care as a standard of Care in Pediatric Oncology. Pediatr Blood Cancer. 2015;62(S5):S829–33. https://doi.org/10.1002/pbc.25695.

    Article  PubMed  PubMed Central  Google Scholar 

  6. American Academy of Pediatrics. Section on hospice and palliative medicine and committee on hospital care. Pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatrics. 2013;132(5):966–72. https://doi.org/10.1542/peds.2013-2731.

    Article  Google Scholar 

  7. Ananth P, Ma C, Al-Sayegh H, et al. Provider perspectives on use of medical marijuana in children with cancer. Pediatrics. 2018;141(1):e20170559. https://doi.org/10.1542/peds.2017-0559.

    Article  PubMed  Google Scholar 

  8. Anderson C, Lund JL, Weaver MA, Wood WA, Olshan AF, Nichols HB. Noncancer mortality among adolescents and young adults with cancer. Cancer. 2019;125(12):2107–14. https://doi.org/10.1002/cncr.32063.

    Article  PubMed  Google Scholar 

  9. Jordan M, Keefer PM, Lee Y-LA, et al. Top ten tips palliative care clinicians should know about caring for children. J Palliat Med. 2018;21(12):1783–9. https://doi.org/10.1089/jpm.2018.0482.

    Article  PubMed  Google Scholar 

  10. Weaver MS, Rosenberg AR, Tager J, Wichman CS, Wiener L. A summary of pediatric palliative care team structure and services as reported by centers caring for children with cancer. J Palliat Med. 2018;21(4):452–62. https://doi.org/10.1089/jpm.2017.0405.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Thienprayoon R, LeBlanc T. Early integration of palliative care into the care of patients with cancer. Hematology. 2015;2015(1):479–83. https://doi.org/10.1182/asheducation-2015.1.479.

    Article  PubMed  Google Scholar 

  12. Steineck A, Wiener L, Mack JW, Shah NN, Summers C, Rosenberg AR. Psychosocial care for children receiving chimeric antigen receptor (CAR) T-cell therapy. Pediatr Blood Cancer. 2020;67(5):e28249. https://doi.org/10.1002/pbc.28249.

    Article  PubMed  PubMed Central  Google Scholar 

  13. Kaye EC, Friebert S, Baker JN. Early integration of palliative Care for Children with high-risk cancer and their families. Pediatr Blood Cancer. 2016;63(4):593–7. https://doi.org/10.1002/pbc.25848.

    Article  PubMed  Google Scholar 

  14. Humphrey L, Kang TI. Palliative care in pediatric patients with hematologic malignancies. Hematology. 2015;2015(1):490–5. https://doi.org/10.1182/asheducation-2015.1.490.

    Article  PubMed  Google Scholar 

  15. Committee on Hospital Care. American Academy of Pediatrics. Family-centered care and the pediatrician’s role. Pediatrics. 2003;112(3 Pt 1):691–7.

    Article  Google Scholar 

  16. Committee on hospital care and institute for patient- and family-centered care. Patient- and family-centered care and the pediatrician’s role. Pediatrics. 2012;129(2):394–404. https://doi.org/10.1542/peds.2011-3084.

    Article  Google Scholar 

  17. Brousseau DC, Hoffmann RG, Nattinger AB, Flores G, Zhang Y, Gorelick M. Quality of primary care and subsequent pediatric emergency department utilization. Pediatrics. 2007;119(6):1131–8. https://doi.org/10.1542/peds.2006-3518.

    Article  PubMed  Google Scholar 

  18. Mack JW, Wolfe J, Cook EF, Grier HE, Cleary PD, Weeks JC. Parents’ roles in decision making for children with cancer in the first year of cancer treatment. J Clin Oncol Off J Am Soc Clin Oncol. 2011;29(15):2085–90. https://doi.org/10.1200/JCO.2010.32.0507.

    Article  Google Scholar 

  19. Mack JW, Fasciano KM, Block SD. Adolescent and Young adult cancer patients’ experiences with treatment decision-making. Pediatrics. 2019;143(5):e20182800. https://doi.org/10.1542/peds.2018-2800.

    Article  PubMed  Google Scholar 

  20. Mack JW, Feudtner C, Hinds PS. Communication and decision support for children with advanced cancer and their families. Am Soc Clin Oncol Educ Book. 2012:637–43. https://doi.org/10.14694/EdBook_AM.2012.32.164.

  21. Levine DR, Mandrell BN, Sykes A, et al. Patients’ and parents’ needs, attitudes, and perceptions about early palliative care integration in pediatric oncology. JAMA Oncol. 2017;3(9):1214–20. https://doi.org/10.1001/jamaoncol.2017.0368.

    Article  PubMed  PubMed Central  Google Scholar 

  22. Levine DR, Baker JN, Wolfe J, Lehmann LE, Ullrich C. Strange bedfellows no more: how integrated stem-cell transplantation and palliative care programs can together improve end-of-life care. J Oncol Pract. 2017;13(9):569–77. https://doi.org/10.1200/JOP.2017.021451.

    Article  PubMed  PubMed Central  Google Scholar 

  23. Moynihan KM, Snaman JM, Kaye EC, et al. Integration of pediatric palliative care into cardiac intensive care: a champion-based model. Pediatrics. 2019;144(2):e20190160. https://doi.org/10.1542/peds.2019-0160.

    Article  PubMed  Google Scholar 

  24. Brock KE, Snaman JM, Kaye EC, et al. Models of pediatric palliative oncology outpatient care—benefits, challenges, and opportunities. J Oncol Pract. 2019;15(9):476–87. https://doi.org/10.1200/JOP.19.00100.

    Article  PubMed  Google Scholar 

  25. Keim-Malpass J, Hart T, Miller J. Coverage of palliative and hospice care for pediatric patients with a life-limiting illness: a policy brief. J Pediatr Health Care. 2013;27(6):511–6. https://doi.org/10.1016/j.pedhc.2013.07.011.

    Article  PubMed  PubMed Central  Google Scholar 

  26. Brock KE, Steineck A, Twist CJ. Trends in end-of-life Care in Pediatric Hematology, oncology, and stem cell transplant patients. Pediatr Blood Cancer. 2016;63(3):516–22. https://doi.org/10.1002/pbc.25822.

    Article  PubMed  Google Scholar 

  27. Kaye EC, Jerkins J, Gushue CA, et al. Predictors of late palliative care referral in children with cancer. J Pain Symptom Manag. 2018;55(6):1550–6. https://doi.org/10.1016/j.jpainsymman.2018.01.021.

    Article  Google Scholar 

  28. Pritchard M, Burghen E, Srivastava DK, et al. Cancer-related symptoms most concerning to parents during the last week and last day of their child’s life. Pediatrics. 2008;121(5):e1301–9. https://doi.org/10.1542/peds.2007-2681.

    Article  PubMed  Google Scholar 

  29. Kassam A, Sutradhar R, Widger K, et al. Predictors of and trends in high-intensity end-of-life care among children with cancer: a population-based study using health services data. J Clin Oncol Off J Am Soc Clin Oncol. 2017;35(2):236–42. https://doi.org/10.1200/JCO.2016.68.8283.

    Article  Google Scholar 

  30. Snaman JM, Talleur AC, Lu J, et al. Treatment intensity and symptom burden in hospitalized adolescent and young adult hematopoietic cell transplant recipients at the end of life. Bone Marrow Transplant. 2018;53(1):84–90. https://doi.org/10.1038/bmt.2017.187.

    Article  CAS  PubMed  Google Scholar 

  31. Kaye EC, DeMarsh S, Gushue CA, et al. Predictors of location of death for children with cancer enrolled on a palliative care service. Oncologist. 2018;23(12):1525–32. https://doi.org/10.1634/theoncologist.2017-0650.

    Article  PubMed  PubMed Central  Google Scholar 

  32. Wolfe J, Orellana L, Ullrich C, et al. Symptoms and distress in children with advanced cancer: prospective patient-reported outcomes from the PediQUEST study. J Clin Oncol. 2015;33(17):1928–35. https://doi.org/10.1200/JCO.2014.59.1222.

    Article  PubMed  PubMed Central  Google Scholar 

  33. Rosenberg AR, Orellana L, Ullrich C, et al. Quality of life in children with advanced cancer: a report from the PediQUEST study. J Pain Symptom Manag. 2016;52(2):243–53. https://doi.org/10.1016/j.jpainsymman.2016.04.002.

    Article  Google Scholar 

  34. Rosenberg AR, Baker KS, Syrjala K, Wolfe J. Systematic review of psychosocial morbidities among bereaved parents of children with cancer. Pediatr Blood Cancer. 2012;58(4):503–12. https://doi.org/10.1002/pbc.23386.

    Article  PubMed  Google Scholar 

  35. McCarthy MC, Clarke NE, Ting CL, Conroy R, Anderson VA, Heath JA. Prevalence and predictors of parental grief and depression after the death of a child from cancer. J Palliat Med. 2010;13(11):1321–6. https://doi.org/10.1089/jpm.2010.0037.

    Article  PubMed  Google Scholar 

  36. Dussel V, Joffe SJ, Hilden JM, Watterson-Schaeffer J, Weeks JC, Wolfe J. Considerations about hastening death among parents of children who die of cancer. Arch Pediatr Adolesc Med. 2010;164(3):231–7. https://doi.org/10.1001/archpediatrics.2009.295.

    Article  PubMed  PubMed Central  Google Scholar 

  37. van der Geest IMM, Darlington A-SE, Streng IC, Michiels EMC, Pieters R, van den Heuvel-Eibrink MM. Parents’ experiences of pediatric palliative care and the impact on long-term parental grief. J Pain Symptom Manag. 2014;47(6):1043–53. https://doi.org/10.1016/j.jpainsymman.2013.07.007.

    Article  Google Scholar 

  38. Wolfe J, Grier HE, Klar N, et al. Symptoms and suffering at the end of life in children with cancer. N Engl J Med. 2000;342(5):326–33. https://doi.org/10.1056/NEJM200002033420506.

    Article  CAS  PubMed  Google Scholar 

  39. Wolfe J, Hammel JF, Edwards KE, et al. Easing of suffering in children with cancer at the end of life: is care changing? J Clin Oncol Off J Am Soc Clin Oncol. 2008;26(10):1717–23. https://doi.org/10.1200/JCO.2007.14.0277.

    Article  Google Scholar 

  40. Bevans KB, Riley AW, Moon J, Forrest CB. Conceptual and methodological advances in child-reported outcomes measurement. Expert Rev Pharmacoecon Outcomes Res. 2010;10(4):385–96. https://doi.org/10.1586/erp.10.52.

    Article  PubMed  PubMed Central  Google Scholar 

  41. Wolfe J, Orellana L, Cook EF, et al. Improving the care of children with advanced cancer by using an electronic patient-reported feedback intervention: results from the PediQUEST randomized controlled trial. J Clin Oncol Off J Am Soc Clin Oncol. 2014;32(11):1119–26. https://doi.org/10.1200/JCO.2013.51.5981.

    Article  Google Scholar 

  42. Dussel V, Orellana L, Soto N, et al. Feasibility of conducting a palliative care randomized controlled trial in children with advanced cancer: assessment of the PediQUEST study. J Pain Symptom Manag. 2015;49(6):1059–69. https://doi.org/10.1016/j.jpainsymman.2014.12.010.

    Article  Google Scholar 

  43. Chakraborty R, Sidana S, Shah GL, Scordo M, Hamilton BK, Majhail NS. Patient-reported outcomes with chimeric antigen receptor T cell therapy: challenges and opportunities. Biol Blood Marrow Transplant. 2019;25(5):e155–62. https://doi.org/10.1016/j.bbmt.2018.11.025.

    Article  PubMed  Google Scholar 

  44. Efficace F, Gaidano G, Lo-Coco F. Patient-reported outcomes in hematology: is it time to focus more on them in clinical trials and hematology practice? Blood. 2017;130(7):859–66. https://doi.org/10.1182/blood-2017-03-737403.

    Article  CAS  PubMed  Google Scholar 

  45. Recht M, Konkle BA, Jackson S, Neufeld EJ, Rockwood K, Pipe S. Recognizing the need for personalization of haemophilia patient-reported outcomes in the prophylaxis era. Haemophilia. 2016;22(6):825–32. https://doi.org/10.1111/hae.13066.

    Article  CAS  PubMed  Google Scholar 

  46. Knisely MR, Pugh N, Kroner B, et al. Patient-reported outcomes in sickle cell disease and association with clinical and psychosocial factors: report from the sickle cell disease implementation consortium. Am J Hematol. 2020;95(9):1066–74. https://doi.org/10.1002/ajh.25880.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  47. Brock KE, Wolfe J, Ullrich C. From the Child’s word to clinical intervention: novel, new, and innovative approaches to symptoms in pediatric palliative care. Children. 2018;5(4):45. https://doi.org/10.3390/children5040045.

    Article  PubMed  PubMed Central  Google Scholar 

  48. Horst J, Frei-Jones M, Deych E, Shannon W, Kharasch ED. Pharmacokinetics and analgesic effects of methadone in children and adults with sickle cell disease. Pediatr Blood Cancer. 2016;63(12):2123–30. https://doi.org/10.1002/pbc.26207.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  49. Strokoff SL, Grossman EG. Compilation of Patient Protection and Affordable Care Act: As Amended Through November 1, 2010 Including Patient Protection and Affordable Care Act Health-Related Portions of the Health Care and Education Reconciliation Act of 2010, vol. 2010; 2010. p. 974.

    Google Scholar 

  50. Zebrack BJ, Stuber ML, Meeske KA, et al. Perceived positive impact of cancer among long-term survivors of childhood cancer: a report from the childhood cancer survivor study. Psychooncology. 2012;21(6):630–9. https://doi.org/10.1002/pon.1959.

    Article  PubMed  Google Scholar 

  51. Lindley LC, Mark BA, Daniel Lee S-Y, Domino M, Song M-K, Jacobson VJ. Factors associated with the provision of hospice care for children. J Pain Symptom Manag. 2013;45(4):701–11. https://doi.org/10.1016/j.jpainsymman.2012.03.010.

    Article  Google Scholar 

  52. Lindley LC, Shaw S-L. Who are the children using hospice care? J Spec Pediatr Nurs JSPN. 2014;19(4):308–15. https://doi.org/10.1111/jspn.12085.

    Article  PubMed  Google Scholar 

  53. Lindley LC, Lyon ME. A profile of children with complex chronic conditions at end of life among Medicaid beneficiaries: implications for health care reform. J Palliat Med. 2013;16(11):1388–93. https://doi.org/10.1089/jpm.2013.0099.

    Article  PubMed  PubMed Central  Google Scholar 

  54. Kang TI, Hexem K, Localio R, Aplenc R, Feudtner C. The use of palliative chemotherapy in pediatric oncology patients: a national survey of pediatric oncologists. Pediatr Blood Cancer. 2013;60(1):88–94. https://doi.org/10.1002/pbc.24329.

    Article  PubMed  Google Scholar 

  55. Johnson L-M, Leek AC, Drotar D, et al. Practical communication guidance to improve phase I informed consent conversations and decision-making in pediatric oncology. Cancer. 2015;121(14):2439–48. https://doi.org/10.1002/cncr.29354.

    Article  PubMed  Google Scholar 

  56. Feudtner C, Walter JK, Faerber JA, et al. Good-parent beliefs of parents of seriously ill children. JAMA Pediatr. 2015;169(1):39–47. https://doi.org/10.1001/jamapediatrics.2014.2341.

    Article  PubMed  PubMed Central  Google Scholar 

  57. Snaman J, Feraco A, Wolfe J, Baker J. “What if?”: addressing uncertainty with families. Pediatr Blood Cancer. 2019;66:66. https://doi.org/10.1002/pbc.27699.

    Article  Google Scholar 

  58. Wolfe J, Klar N, Grier HE, et al. Understanding of prognosis among parents of children who died of cancer: impact on treatment goals and integration of palliative care. JAMA. 2000;284(19):2469. https://doi.org/10.1001/jama.284.19.2469.

    Article  CAS  PubMed  Google Scholar 

  59. Feudtner C. The breadth of hopes. N Engl J Med. 2009;361(24):2306–7. https://doi.org/10.1056/NEJMp0906516.

    Article  CAS  PubMed  Google Scholar 

  60. Folkman S. Stress, coping, and hope. Psychooncology. 2010;19(9):901–8. https://doi.org/10.1002/pon.1836.

    Article  PubMed  Google Scholar 

  61. Mack JW, Wolfe J, Cook EF, Grier HE, Cleary PD, Weeks JC. Hope and prognostic disclosure. J Clin Oncol Off J Am Soc Clin Oncol. 2007;25(35):5636–42. https://doi.org/10.1200/JCO.2007.12.6110.

    Article  Google Scholar 

  62. Granek L, Barrera M, Shaheed J, et al. Trajectory of parental hope when a child has difficult-to-treat cancer: a prospective qualitative study. Psychooncology. 2013;22(11):2436–44. https://doi.org/10.1002/pon.3305.

    Article  CAS  PubMed  Google Scholar 

  63. Levetown M, Academy A, of Pediatrics Committee on Bioethics. Communicating with children and families: from everyday interactions to skill in conveying distressing information. Pediatrics. 2008;121(5):e1441–60. https://doi.org/10.1542/peds.2008-0565.

    Article  PubMed  Google Scholar 

  64. Wiener L, Zadeh S, Battles H, et al. Allowing adolescents and young adults to plan their end-of-life care. Pediatrics. 2012;130(5):897–905. https://doi.org/10.1542/peds.2012-0663.

    Article  PubMed  PubMed Central  Google Scholar 

  65. Weaver MS, Baker JN, Gattuso JS, Gibson DV, Sykes AD, Hinds PS. Adolescents’ preferences for treatment decisional involvement during their cancer. Cancer. 2015;121(24):4416–24. https://doi.org/10.1002/cncr.29663.

    Article  PubMed  Google Scholar 

  66. Five Wishes. Pediatrics, adolescents & young adults. https://fivewishes.org/five-wishes/individuals-families/individuals-and-families/children-and-adolescents. Accessed 17 Nov 2020.

  67. Hunger SP, Lu X, Devidas M, et al. Improved survival for children and adolescents with acute lymphoblastic leukemia between 1990 and 2005: a report from the children’s oncology group. J Clin Oncol Off J Am Soc Clin Oncol. 2012;30(14):1663–9. https://doi.org/10.1200/JCO.2011.37.8018.

    Article  Google Scholar 

  68. Hunger SP, Raetz EA. How I treat relapsed acute lymphoblastic leukemia in the pediatric population. Blood. 2020;136(16):1803–12. https://doi.org/10.1182/blood.2019004043.

    Article  CAS  PubMed  Google Scholar 

  69. Manitta V, Zordan R, Cole-Sinclair M, Nandurkar H, Philip J. The symptom burden of patients with hematological malignancy: a cross-sectional observational study. J Pain Symptom Manag. 2011;42(3):432–42. https://doi.org/10.1016/j.jpainsymman.2010.12.008.

    Article  Google Scholar 

  70. Grupp SA, Kalos M, Barrett D, et al. Chimeric antigen receptor-modified T cells for acute lymphoid leukemia. N Engl J Med. 2013;368(16):1509–18. https://doi.org/10.1056/NEJMoa1215134.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  71. Grady D. In Girl’s Last Hope, Altered immune cells beat leukemia (2012). The New York Times. https://wwwnytimescom/2012/12/10/health/a-breakthrough-against-leukemia-using-altered-t-cellshtml. Published 09 Dec 2012. Accessed 17 Nov 2020.

  72. Maude SL, Frey N, Shaw PA, et al. Chimeric antigen receptor T cells for sustained remissions in leukemia. N Engl J Med. 2014;371(16):1507–17. https://doi.org/10.1056/NEJMoa1407222.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  73. Whittington MD, McQueen RB, Ollendorf DA, et al. Long-term survival and value of chimeric antigen receptor T-cell therapy for pediatric patients with relapsed or refractory leukemia. JAMA Pediatr. 2018;172(12):1161–8. https://doi.org/10.1001/jamapediatrics.2018.2530.

    Article  PubMed  PubMed Central  Google Scholar 

  74. Odeniyi F, Nathanson PG, Schall TE, Walter JK. Communication challenges of oncologists and intensivists caring for pediatric oncology patients: a qualitative study. J Pain Symptom Manag. 2017;54(6):909–15. https://doi.org/10.1016/j.jpainsymman.2017.06.013.

    Article  Google Scholar 

  75. Kim A, Fox E, Warren K, et al. Characteristics and outcome of pediatric patients enrolled in phase I oncology trials. Oncologist. 2008;13(6):679–89. https://doi.org/10.1634/theoncologist.2008-0046.

    Article  CAS  PubMed  Google Scholar 

  76. Cousino MK, Zyzanski SJ, Yamokoski AD, et al. Communicating and understanding the purpose of pediatric phase I cancer trials. J Clin Oncol. 2012;30(35):4367–72. https://doi.org/10.1200/JCO.2012.42.3004.

    Article  PubMed  PubMed Central  Google Scholar 

  77. Cuviello A, Boss R, Shah N, Battles H, Beri A, Wiener L. Utilization of palliative care consultations in pediatric oncology phase I clinical trials. Pediatr Blood Cancer. 2019;66(8):e27771. https://doi.org/10.1002/pbc.27771.

    Article  PubMed  PubMed Central  Google Scholar 

  78. The private worlds of dying children. 1980. https://press.princeton.edu/books/paperback/9780691028200/the-private-worlds-of-dying-children. Accessed 18 Nov 2020.

  79. Kreicbergs U, Valdimarsdóttir U, Onelöv E, Henter J-I, Steineck G. Talking about death with children who have severe malignant disease. N Engl J Med. 2004;351(12):1175–86. https://doi.org/10.1056/NEJMoa040366.

    Article  CAS  PubMed  Google Scholar 

  80. Jankovic M, Spinetta J, Riva L, Conter V, Masera C. Telling young children with leukemia their diagnosis: the flower garden as analogy. Pediatr Hematol Oncol. 1994;11(1):75–81.

    Article  CAS  PubMed  Google Scholar 

  81. McSherry M, Kehoe K, Carroll JM, Kang TI, Rourke MT. Psychosocial and spiritual needs of children living with a life-limiting illness. Pediatr Clin N Am. 2007;54(5):609–29; ix–x. https://doi.org/10.1016/j.pcl.2007.08.002.

    Article  Google Scholar 

  82. Jones B, Currin-Mcculloch J, Pelletier W, Sardi-Brown V, Brown P, Wiener L. Psychosocial standards of care for children with cancer and their families: a national survey of pediatric oncology social workers. Soc Work Health Care. 2018;57(4):221–49. https://doi.org/10.1080/00981389.2018.1441212.

    Article  PubMed  PubMed Central  Google Scholar 

  83. Ajayi TA, Edmonds KP. Palliative care answers the challenges of transitioning serious illness of childhood to adult medicine. J Palliat Med. 2014;17(4):469–71. https://doi.org/10.1089/jpm.2013.0263.

    Article  PubMed  Google Scholar 

  84. Jonas D, Scanlon C, Rusch R, Ito J, Joselow M. Bereavement after a Child’s death. Child Adolesc Psychiatr Clin N Am. 2018;27(4):579–90. https://doi.org/10.1016/j.chc.2018.05.010.

    Article  PubMed  Google Scholar 

  85. Wiener L, McConnell DG, Latella L, Ludi E. Cultural and religious considerations in pediatric palliative care. Palliat Support Care. 2013;11(1):47–67. https://doi.org/10.1017/S1478951511001027.

    Article  PubMed  Google Scholar 

  86. Kaye EC, Gushue CA, DeMarsh S, et al. Impact of race and ethnicity on end-of-life experiences for children with cancer. Am J Hosp Palliat Care. 2019;36(9):767–74. https://doi.org/10.1177/1049909119836939.

    Article  PubMed  Google Scholar 

  87. Thienprayoon R, Lee SC, Leonard D, Winick N. Racial and ethnic differences in hospice enrollment among children with cancer. Pediatr Blood Cancer. 2013;60(10):1662–6. https://doi.org/10.1002/pbc.24590.

    Article  PubMed  Google Scholar 

  88. Ilowite MF, Cronin AM, Kang TI, Mack JW. Disparities in prognosis communication among parents of children with cancer: the impact of race and ethnicity. Cancer. 2017;123(20):3995–4003. https://doi.org/10.1002/cncr.30960.

    Article  PubMed  Google Scholar 

  89. Bona K, Wolfe J. Disparities in pediatric palliative care: an opportunity to strive for equity. Pediatrics. 2017;140(4):e20171662. https://doi.org/10.1542/peds.2017-1662.

    Article  PubMed  Google Scholar 

  90. Johnston EE, Bogetz J, Saynina O, Chamberlain LJ, Bhatia S, Sanders L. Disparities in inpatient intensity of end-of-life Care for Complex Chronic Conditions. Pediatrics. 2019;143(5):e20182228. https://doi.org/10.1542/peds.2018-2228.

    Article  PubMed  Google Scholar 

  91. Davies B, Larson J, Contro N, Cabrera AP. Perceptions of discrimination among Mexican American families of seriously ill children. J Palliat Med. 2011;14(1):71–6. https://doi.org/10.1089/jpm.2010.0315.

    Article  PubMed  PubMed Central  Google Scholar 

  92. Foronda C, Baptiste D-L, Reinholdt MM, Ousman K. Cultural humility: a concept analysis. J Transcult Nurs. 2016;27(3):210–7. https://doi.org/10.1177/1043659615592677.

    Article  PubMed  Google Scholar 

  93. Kraetschmer N, Sharpe N, Urowitz S, Deber RB. How does trust affect patient preferences for participation in decision-making? Health Expect. 2004;7(4):317–26. https://doi.org/10.1111/j.1369-7625.2004.00296.x.

    Article  PubMed  PubMed Central  Google Scholar 

  94. Montgomery KE, Sawin KJ, Hendricks-Ferguson V. Communication during palliative care and end of life: perceptions of experienced pediatric oncology nurses. Cancer Nurs. 2017;40(2):E47–57. https://doi.org/10.1097/NCC.0000000000000363.

    Article  PubMed  Google Scholar 

  95. Foster TL, Lafond DA, Reggio C, Hinds PS. Pediatric palliative Care in Childhood Cancer Nursing: from diagnosis to cure or end of life. Semin Oncol Nurs. 2010;26(4):205–21. https://doi.org/10.1016/j.soncn.2010.08.003.

    Article  PubMed  Google Scholar 

  96. Grech A, Depares J, Scerri J. Being on the frontline: nurses’ experiences providing end-of-life care to adults with hematologic malignancies. J Hosp Palliat Nurs. 2018;20(3):237–44. https://doi.org/10.1097/NJH.0000000000000433.

    Article  PubMed  Google Scholar 

  97. Mehta A, Chan L. Understanding of the concept of “Total pain”: a prerequisite for pain control. J Hosp Palliat Nurs. 2008;10(1):26–32. https://doi.org/10.1097/01.NJH.0000306714.50539.1a.

    Article  Google Scholar 

  98. Kaye EC, Kegel A, Weber M, et al. Food is love: partnering with families to provide nourishment at the end of life. J Clin Oncol Off J Am Soc Clin Oncol. 2020;38(16):1864–7. https://doi.org/10.1200/JCO.20.00176.

    Article  Google Scholar 

  99. Oxford Textbook of Palliative Nursing. Oxford University Press. https://oxfordmedicine.com/view/10.1093/med/9780199332342.001.0001/med-9780199332342. Accessed 17 Nov 2020

  100. Hoell JI, Warfsmann J, Balzer S, Borkhardt A, Janssen G, Kuhlen M. End-of-life care in children with hematologic malignancies. Oncotarget. 2017;8(52):89939–48. https://doi.org/10.18632/oncotarget.21188.

    Article  PubMed  PubMed Central  Google Scholar 

  101. Friebert S, Greffe B, Wheeler J. Integrating palliative care with pediatric hematology/oncology. In: Palliative care for infants, children, and adolescents: a practical handbook; 2011. p. 488–520.

    Google Scholar 

  102. Puchalski C, Ferrell B, Virani R, et al. Improving the quality of spiritual care as a dimension of palliative care: the report of the consensus conference. J Palliat Med. 2009;12(10):885–904. https://doi.org/10.1089/jpm.2009.0142.

    Article  PubMed  Google Scholar 

  103. Lion AH, Skiles JL, Watson BN, Young JD, Torke AM. Chaplain care in pediatric oncology: insight for interprofessional collaboration. Pediatr Blood Cancer. 2019;66(12):e27971. https://doi.org/10.1002/pbc.27971.

    Article  PubMed  Google Scholar 

  104. Koenig H, King D, Carson VB. Handbook of religion and health. 2nd ed. Oxford University Press; 2012.

    Google Scholar 

  105. Purow B, Alisanski S, Putnam G, Ruderman M. Spirituality and pediatric cancer. South Med J. 2011;104(4):299–302. https://doi.org/10.1097/SMJ.0b013e3182083f40.

    Article  PubMed  Google Scholar 

  106. Ennis-Durstine RK, Brown RM. Spiritual Care in Pediatric Oncology. In: Abrams AN, Muriel AC, Wiener L, editors. Pediatric psychosocial oncology: textbook for multidisciplinary care. Springer International Publishing; 2016. p. 327–37. https://doi.org/10.1007/978-3-319-21374-3_18.

    Chapter  Google Scholar 

  107. Fitchett G, Murphy PE, Kim J, Gibbons JL, Cameron JR, Davis JA. Religious struggle: prevalence, correlates and mental health risks in diabetic, congestive heart failure, and oncology patients. Int J Psychiatry Med. 2004;34(2):179–96. https://doi.org/10.2190/UCJ9-DP4M-9C0X-835M.

    Article  PubMed  Google Scholar 

  108. Hui D, Bruera E. Models of integration of oncology and palliative care. Ann Palliat Med. 2015;4(3):898.

    Google Scholar 

  109. Wachholtz AB, Pearce MJ. Does spirituality as a coping mechanism help or hinder coping with chronic pain? Curr Pain Headache Rep. 2009;13(2):127–32. https://doi.org/10.1007/s11916-009-0022-0.

    Article  PubMed  Google Scholar 

  110. Ullrich CK, Lehmann L, London WB, et al. End-of-life care patterns associated with pediatric palliative care among children who underwent hematopoietic stem cell transplant. Biol Blood Marrow Transplant. 2016;22(6):1049–55. https://doi.org/10.1016/j.bbmt.2016.02.012.

    Article  PubMed  PubMed Central  Google Scholar 

  111. Foster TL, Gilmer MJ, Davies B, et al. Bereaved parents’ and siblings’ reports of legacies created by children with cancer. J Pediatr Oncol Nurs. 2009;26(6):369–76. https://doi.org/10.1177/1043454209340322.

    Article  PubMed  Google Scholar 

  112. Foster TL, Dietrich MS, Friedman DL, Gordon JE, Gilmer MJ. National survey of children’s hospitals on legacy-making activities. J Palliat Med. 2012;15(5):573–8. https://doi.org/10.1089/jpm.2011.0447.

    Article  PubMed  PubMed Central  Google Scholar 

  113. Riordan PA, Price M, Robbins-Welty GA, et al. Top ten tips palliative care clinicians should know about bereavement and grief. J Palliat Med. 2020;23:1098. https://doi.org/10.1089/jpm.2020.0341.

    Article  PubMed  Google Scholar 

  114. Jones BL, Contro N, Koch KD. The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring. Pediatrics. 2014;133(Suppl 1):S8–15. https://doi.org/10.1542/peds.2013-3608C.

    Article  PubMed  Google Scholar 

  115. Jalmsell L, Onelöv E, Steineck G, Henter J-I, Kreicbergs U. Hematopoietic stem cell transplantation in children with cancer and the risk of long-term psychological morbidity in the bereaved parents. Bone Marrow Transplant. 2011;46(8):1063–70. https://doi.org/10.1038/bmt.2010.287.

    Article  CAS  PubMed  Google Scholar 

  116. Field MJ, Behrman RE. Institute of Medicine (US) committee on palliative and end-of-life care for children and their families. In: Field MJ, Behrman RE, editors. When children die: improving palliative and end-of-life care for children and their families. National Academies Press (US); 2003; http://www.ncbi.nlm.nih.gov/books/NBK220818/. Accessed 18 Nov 2020.

    Google Scholar 

  117. Macdonald ME, Liben S, Carnevale F, et al. Parental perspectives on hospital staff members’ acts of kindness and commemoration after a Child’s death. Pediatrics. 2005;116:884–90. https://doi.org/10.1542/peds.2004-1980.

    Article  PubMed  Google Scholar 

  118. Rusch R, Greenman J, Scanlon C, Horne K, Jonas DF. Bibliotherapy and bereavement: harnessing the power of Reading to enhance family coping in pediatric palliative care. J Soc Work End--Life Palliat Care. 2020;16(2):85–98. https://doi.org/10.1080/15524256.2020.1745728.

    Article  PubMed  Google Scholar 

  119. Youngblut JM, Brooten D. What children wished they had/had not done and their coping in the first thirteen months after their Sibling’s neonatal/pediatric intensive care unit/emergency department death. J Palliat Med. 2021;24(2):226–32. https://doi.org/10.1089/jpm.2019.0538.

    Article  PubMed  PubMed Central  Google Scholar 

  120. Gaab EM, Owens GR, MacLeod RD. Siblings caring for and about pediatric palliative care patients. J Palliat Med. 2014;17(1):62–7. https://doi.org/10.1089/jpm.2013.0117.

    Article  PubMed  Google Scholar 

  121. Sanchez-Reilly S, Morrison LJ, Carey E, et al. Caring for oneself to care for others: physicians and their self-care. J Support Oncol. 2013;11(2):75–81.

    Article  PubMed  PubMed Central  Google Scholar 

  122. Mills J, Wand T, Fraser JA. Examining self-care, self-compassion and compassion for others: a cross-sectional survey of palliative care nurses and doctors. Int J Palliat Nurs. 2018;24(1):4–11. https://doi.org/10.12968/ijpn.2018.24.1.4.

    Article  PubMed  Google Scholar 

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Authors and Affiliations

  1. Silver School of Social Work, New York University, New York, NY, USA

    Danielle Faye Jonas

  2. Department of Pediatrics, Seattle Children’s Hospital, Seattle, WA, USA

    Angela Steineck

  3. Department of Spiritual Care, Carondelet St. Joseph’s Hospital, Tucson, AZ, USA

    Joshua A. Johnson

  4. Department of Pain and Palliative Medicine, Connecticut Children’s Medical Center, Hartford, CT, USA

    Mallory Fossa

  5. Department of Pediatrics, Section of Hematology-Oncology, Baylor College of Medicine, Texas Children’s Cancer Center, Houston, TX, USA

    Julienne Brackett

  6. Hospice and Palliative Medicine Fellowship Program, Department of Oncology, St. Jude Children’s Research Hospital, Memphis, TN, USA

    Erica Carmen Kaye

  7. Department of Oncology, Division of Quality of Life and Palliative Care, St. Jude Children’s Research Hospital, Memphis, TN, USA

    Deena R. Levine

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  1. Danielle Faye Jonas
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  4. Mallory Fossa
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Correspondence to Danielle Faye Jonas .

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Editors and Affiliations

  1. Harvard Medical School, Boston, MA, USA

    Christina K. Ullrich

  2. Oregon Health and Science University, Portland, OR, USA

    Eric J. Roeland

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Jonas, D.F. et al. (2023). Palliative Care for Special Populations: Pediatrics. In: Ullrich, C.K., Roeland, E.J. (eds) Palliative Care in Hematologic Malignancies and Serious Blood Disorders. Springer, Cham. https://doi.org/10.1007/978-3-031-38058-7_20

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