End-of-Life Care Patterns Associated with Pediatric Palliative Care among Children Who Underwent Hematopoietic Stem Cell Transplant

• Published in: Biology of blood and marrow transplantation 2016-06, Vol.22 (6), p.1049-1055
• Main Authors: Ullrich, Christina K, Lehmann, Leslie, London, Wendy B, Guo, Dongjing, Sridharan, Madhumitha, Koch, Richard, Wolfe, Joanne
• Format: Article
• Language: English
• Subjects: Adolescent; Child; Child, Preschool; Decision Making; End of life; Female; Hematology, Oncology and Palliative Medicine; Hematopoietic Stem Cell Transplantation - methods; Humans; Male; Palliative care; Palliative Care - methods; Pediatric; Prognosis; Resuscitation Orders; Retrospective Studies; Stem cell transplant; Terminal Care - methods
• ISSN: 1083-8791; 1523-6536
• DOI: 10.1016/j.bbmt.2016.02.012

Abstract Stem cell transplantation (SCT) is an intensive therapy offering the possibility of cure for life-threatening conditions but with risk of serious complications and death. Outcomes associated with pediatric palliative care (PPC) for children who undergo SCT are unknown. Therefore, we evaluated whether PPC consultation is associated with differences in end-of-life (EOL) care patterns for children who underwent SCT and did not survive. Medical records of children who underwent SCT at Boston Children's Hospital/Dana-Farber Cancer Institute for any indication from September 2004 to December 2012 and did not survive were reviewed. Child demographic and clinical characteristics and PPC consultation and EOL care patterns were abstracted. Children who received PPC (PPC group) were compared with those who did not (non-PPC group). Children who received PPC consultation (n = 37) did not differ from the non-PPC group (n = 110) with respect to demographic or clinical characteristics, except they were more likely to have undergone unrelated allogeneic SCT (PPC, 68%; non-PPC, 39%; P  = .02) or to have died from treatment-related toxicity (PPC, 76%; non-PPC, 54%; P  = .03). PPC consultation occurred at a median of .7 months (interquartile range [IQR], .4 to 4.2) before death. PPC consultations most commonly addressed goals of care/decision-making (92%), psychosocial support (84%), pain management (65%), and non–pain symptom management (70%). Prognosis discussions (ie, the likelihood of survival) occurred more commonly in the PPC group (PPC, 97%; non-PPC, 83%; P  = .04), as did resuscitation status discussions (PPC, 88%; non-PPC, 58%; P  = .002). These discussions also occurred earlier in the PPC group, for prognosis a median of 8 days (IQR, 4 to 26) before death compared with 2 days (IQR, 1 to 13) in the non-PPC group and for resuscitation status a median of 7 days (IQR, 3 to 18) compared with 2 days (IQR, 1 to 5) in the non-PPC group ( P