title: End-of-Life Care Patterns Associated with Pediatric Palliative Care among Children Who Underwent Hematopoietic Stem Cell Transplant.
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 < .001 for both of the timing of prognosis and resuscitation status discussions). The PPC group was also was more likely to have resuscitation status documented (PPC, 97%; non-PPC, 68%; P = .002). With respect to patterns of care, compared with non-PPC, the PPC group was as likely to die in a medicalized setting (ie, the hospital) (PPC, 84%; non-PPC, 77%; P = .06) or have hospice care (PPC, 22%; non-PPC, 18%; P = .6). However, among children who died in the hospital, those who received PPC were more likely to die outside the intensive care unit (PPC, 80%; non-PPC, 58%; P = .03). In addition, the PPC group was less likely to receive intervention-focused care such as intubation in the 24 hours before death (PPC, 42%; non-PPC, 66%; P = .02) or cardiopulmonary resuscitation (PPC, 3%; non-PPC, 20%; P = .03) at EOL. Children who received PPC for at least a month were more likely to receive hospice care (PPC, 41%; non-PPC, 5%; P = .01). Children who underwent SCT and did not survive were likely to die in a medicalized setting, irrespective of PPC. However, PPC was associated with less intervention-focused care and greater opportunity for EOL communication and advance preparation. In the intense, cure-oriented SCT setting, PPC may facilitate advance care planning in this high-risk population.
authors.affiliation: Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts; Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts; Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, Boston, Massachusetts; Department of Medicine, Boston Children's Hospital, Boston, Massachusetts. Electronic address: christina_ullrich@dfci.harvard.edu.
authors.forename: Christina K
authors.initials: CK
authors.lastname: Ullrich
authors.affiliation: Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts; Department of Medicine, Boston Children's Hospital, Boston, Massachusetts.
authors.forename: Leslie
authors.initials: L
authors.lastname: Lehmann
authors.affiliation: Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts; Department of Medicine, Boston Children's Hospital, Boston, Massachusetts.
authors.forename: Wendy B
authors.initials: WB
authors.lastname: London
authors.affiliation: Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts; Department of Medicine, Boston Children's Hospital, Boston, Massachusetts.
authors.forename: Dongjing
authors.initials: D
authors.lastname: Guo
authors.affiliation: Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts; Department of Medicine, Boston Children's Hospital, Boston, Massachusetts.
authors.forename: Madhumitha
authors.initials: M
authors.lastname: Sridharan
authors.affiliation: Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts; Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, Boston, Massachusetts.
authors.forename: Richard
authors.initials: R
authors.lastname: Koch
authors.affiliation: Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts; Department of Medicine, Boston Children's Hospital, Boston, Massachusetts.
authors.forename: Joanne
authors.initials: J
authors.lastname: Wolfe
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D003657:Decision Making; D005260:Female; D018380:Hematopoietic Stem Cell Transplantation / Q000379:methods*; D006801:Humans; D008297:Male; D010166:Palliative Care / Q000379:methods*; D011379:Prognosis; D016414:Resuscitation Orders; D012189:Retrospective Studies; D013727:Terminal Care / Q000379:methods*
keywords: End of life; Palliative care; Pediatric; Stem cell transplant