End-of-life care for children with medical complexity: Does advance care planning matter?

Abstract

Learning Objectives: For many children with medical complexity (CMC), early death is an inevitable outcome of their illness, making advance care planning (ACP) a vital component in the optimal care of this population. Studies evaluating the relationship between access to ACP and important end of life (EOL) care outcomes for CMC are lacking. We evaluated whether ACP prior to death was associated with differences in parental perceptions of suffering, quality of life (QOL), and EOL care patterns for CMC. Methods: Single center cross sectional survey study of bereaved parents of CMC < 21 years of age who received care at Boston Children's Hospital and died between 2008 and 2015. Results: 108 bereaved parents responded (65% response rate) a mean of 4.3 years after their child's death. Median age at death was 10 years [1.3-19.7], 61% died in the hospital, 27% received intensive life-sustaining therapies in the last 2 days of life, and 66% parents reported having ACP for their child. Parents of CMC who had ACP were more likely to rate their child's QOL at EOL as good to excellent (60% vs 38%; p=0.04), more likely to feel prepared about what to expect at EOL (81% vs 36%; p<0.01), and more likely to have their child die in a preferred location (83% vs 65%; p=0.05). CMC who had ACP prior to death were more likely to have documented resuscitation orders (77% vs 33%; p< 0.01) and less likely to have intensive life-sustaining therapies in the last 2 days of life (19% vs 39%; p=0.03). ACP did not impact perceived suffering at the EOL (32% vs 32%; p=0.96). Conclusions: Access to ACP is associated with improved EOL care outcomes for CMC including superior quality of life, improved parental preparedness for death, increased documentation of resuscitation orders, decreased intensive life-sustaining therapies in the last 2 days of life, and a larger proportion of children dying in a preferred location. According to their parents, however, one third of children experience suffering at EOL and this experience is not impacted by ACP. Further studies are needed to evaluate communication around symptom management at the EOL.