End-of-Life Experience of Children Undergoing Stem Cell Transplantation: Parent and Provider Perspectives and Patterns of Care.

As an intense therapy delivered with curative intent, with substantial risk for life-threatening toxicity, stem cell transplant (SCT) may uniquely impact the end-of-life (EOL) experience of children who undergo SCT but do not survive. Despite this, very little is known about the EOL experience of such children.

To evaluate patterns of and parent and physician perspectives on EOL care for children after SCT.

We evaluated parent and physician perspectives and patterns of EOL care via a retrospective, cross-sectional survey of 141 parents of children who died of cancer, and primarily received care at one of two tertiary care pediatric institutions (response rate 64%). Chart review provided additional information. Children for whom SCT was the last cancer therapy (n=31) were compared with those for whom it was not (non-SCT, n=110).

The SCT group included 22/31 (71%) allogeneic and 9/31 (29%) autologous SCT. The median (IQR) interval between last cancer treatment and death was 65 (30-127) days (SCT group) and 25 (8-59) days (non-SCT group) (p<0.001). SCT parents and physicians realized there was no realistic chance for cure later than their non-SCT peers (Table 1) and were more likely to have a primary goal of cure/life extension (Table 2). SCT children were more likely to die from toxicity (RR 14.2, CI 6.4-31.6, p<0.001) and be intubated at EOL (RR=6.7, CI 3.71-12.1, p<0.001), with less opportunity to plan location of death (LOD) (RR=0.24, CI 0.12-0.48, p<0.001). Their resuscitation discussions occurred later (4.5 (1-8.5) days before death versus 17 (6-38) days, p<0.001) and resulted in fewer DNR orders (16/31 (52%) of SCT children with a DNR order versus 81/110 (74%) of non-SCT children, p=0.028). SCT children were more likely to suffer highly from their last cancer therapy (RR=2.7, CI 1.3-5.8, p=0.019), and they experienced more physical symptoms (mean 3.5 (2.0) symptoms versus 2.4 (1.9), p=0.009) and psychological symptoms (mean 2.2 (1.0) symptoms versus 1.5 (1.2), p=0.005). The 13 SCT children whose parent and physician recognized there was no realistic chance for cure ≥7 days before death were more likely to have location of death planned (RR=2.9, CI 1.3-6.1, p=0.02), and resuscitation discussed (RR=2.2, CI 1.4-3.4, p=0.02), and had a lower likelihood of being intubated at EOL (RR=0.39, CI 0.17-0.93, p=0.05). If the parent's primary goal was to reduce suffering, their goal was more likely to be achieved if they, along with the physician, recognized no realistic chance for cure at least 7 days before death (RR=4.8, CI 1.3-18.6, p=0.03).

SCT is associated with significant suffering and less opportunity to recognize and prepare for EOL. Given the high morbidity and mortality associated with SCT and the shorter timeframes, children and families undergoing SCT may benefit from ongoing discussions regarding prognosis, goals and opportunities to maximize quality of life.

No relevant conflicts of interest to declare.