Background
Stem cell transplantation (SCT) is an intensive therapy offering the possibility of cure for life-threatening conditions although with risk of serious complications and death. Outcomes associated with pediatric palliative care (PPC) for children who undergo SCT are unknown.
Objective
To evaluate whether PPC consultation is associated with differences in end-of-life (EOL) care patterns for children who underwent SCT and did not survive
Methods
Medical records of children who underwent SCT at Boston Children’s Hospital/Dana-Farber Cancer Institute for any indication from September 2004-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).
Results
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=0.02) or to have died from treatment-related toxicity (PPC=76%, non-PPC=54%, p=0.03). PPC consultation occurred at a median of 0.7 (interquartile range [IQR] 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 (70%).
Prognosis discussions (i.e., the likelihood of survival) occurred more commonly in the PPC group (PPC=97%, non-PPC=83%, p=0.04), as did resuscitation status discussions (PPC=88%, non-PPC=58%, p=0.002). These discussions also occurred earlier in the PPC group, for prognosis a median of 8 (IQR 4–26) days prior to death compared to 2 (IQR 1–13) days in the non-PPC group and for resuscitation status a median of 7 (IQR 3–18) days compared to 2 (IQR 1–5) in the non-PPC group (p<0.001 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=0.002).
With respect to patterns of care, compared to non-PPC, the PPC group was as likely to die in a medicalized setting (i.e. the hospital) (PPC=84%, non-PPC=77%, p=0.06) or 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=80%, non-PPC=58%, p=0.03). In addition, the PPC group was less likely to receive intervention-focused care such as intubation in the 24 hours prior to death (PPC=42%, non-PPC=66%, p=0.02) or cardiopulmonary resuscitation (CPR) (PPC=3%, non-PPC=20%, p=0.03) at EOL. 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 SCT and do 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 E...