Pediatric palliative care and end of life outcomes for pediatric hematopoietic stem cell transplant recipients who do not survive

Abstract

Background: Hematopoietic Stem Cell Transplant (HSCT) is intensive therapy delivered with curative intent, offering the possibility of cure for life-threatening conditions but with risk of serious complications and death. Whether pediatric palliative care (PPC) consultation is associated with differences in patterns of end of life (EOL) care for children who undergo HSCT and do not survive is unknown. Methods: Medical records of children who underwent HSCT at Boston Children’s Hospital/Dana-Farber Cancer Institute for any indication from September 2004-December 2012 and did not survive were reviewed. Demographic and clinical characteristics of children as well as PPC consultation and EOL care patterns were abstracted. Children who received PPC (PPC) were compared with those who did not (non-PPC). Results: The PPC group (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 HSCT (PPC=68%, non- PPC=39%, p=0.02) and have died from treatment-related toxicity (PPC=76%, non-PPC=54%, p=0.03). Children who received PPC consultation did so a median of 0.7 (25-75th ptile 0.4-4.2) months before death. PPC consultations most commonly addressed goals of care/decision-making (92%), psychosocial support (84%), pain management (65%), and non-pain symptom management (75%). Prognosis and resuscitation status discussions occurred both more commonly and earlier for the PPC group than the non-PPC group (see table). The PPC group was as likely to die in the ICU (PPC=49%, non-PPC=62%, p=0.06) and have hospice (PPC=22%, non-PPC=18%, p=0.6). However, among children who died in the hospital, those who received PPC were more likely to die outside the ICU (PPC=42%, non- PPC=20%, p=0.03). The PPC group was less likely to be intubated in the 24 hours prior to death (PPC=42%, non- PPC=66%, p=0.02) and also received CPR less commonly (PPC=3%, non-PPC=20%, p=0.03). With respect to PPC duration, children who received PPC for at least a month were more likely to receive hospice (PPC=41%, non-PPC=5%, p=0.01). Conclusion: Children who underwent HSCT and did not survive experienced intensive care at EOL, irrespective of PPC. However, in the intense, cure-oriented setting of HSCT, PPC is associated with greater opportunity for EOL communication and advance preparation and may play a role in facilitating advance care planning in this high-risk population.