End-of-life Care For Children With Medical Complexity: Does Advance Care Planning Matter?
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.
DeCourcey D; Silverman M; Oladunjoye A; Wolfe J
Critical Care Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1097/01.ccm.0000509223.50896.82
Patterns of Care at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions.
Complex Chronic Conditions; End-of-life Care; Palliative Care; Parental Perspectives
OBJECTIVE: To characterize patterns of care at the end of life for children and young adults with life-threatening complex chronic conditions (LT-CCCs) and to compare them by LT-CCC type. STUDY DESIGN: Cross-sectional survey of bereaved parents (n = 114; response rate of 54%) of children with noncancer, noncardiac
DeCourcey DD; Silverman M; Oladunjoye A; Balkin EM; Wolfe J
The Journal Of Pediatrics
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1016/j.jpeds.2017.09.078" target="_blank" rel="noreferrer">10.1016/j.jpeds.2017.09.078</a>
Patterns of Care at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions
medical record; palliative therapy; Terminal Care; brain disease; central nervous system disease; Child; chromosome disorder; comfort; Death; Drug withdrawal; Female; Human; Intensive care unit; life sustaining treatment; lung disease; major clinical study; Male; Resuscitation; Study Design; Young Adult
OBJECTIVE: To characterize patterns of care at the end of life for children and young adults with life-threatening complex chronic conditions (LT-CCCs) and to compare them by LT-CCC type. STUDY DESIGN: Cross-sectional survey of bereaved parents (nā=ā114; response rate of 54%) of children with noncancer, noncardiac LT-CCCs who received care at a quaternary care children's hospital and medical record abstraction. RESULTS: The majority of children with LT-CCCs died in the hospital (62.7%) with more than one-half (53.3%) dying in the intensive care unit. Those with static encephalopathy (AOR, 0.19; 95% CI, 0.04-0.98), congenital and chromosomal disorders (AOR, 0.28; 95% CI, 0.09-0.91), and pulmonary disorders (AOR, 0.08; 95% CI, 0.01-0.77) were significantly less likely to die at home compared with those with progressive central nervous system (CNS) disorders. Almost 50% of patients died after withdrawal or withholding of life-sustaining therapies, 17.5% died during active resuscitation, and 36% died while receiving comfort care only. The mode of death varied widely across LT-CCCs, with no patients with pulmonary disorders dying receiving comfort care only compared with 66.7% of those with CNS progressive disorders. A majority of patients had palliative care involvement (79.3%); however, in multivariable analyses, there was distinct variation in receipt of palliative care across LT-CCCs, with patients having CNS static encephalopathy (AOR, 0.07; 95% CI, 0.01-0.68) and pulmonary disorders (AOR, 0.07; 95% CI, 0.01-.09) significantly less likely to have palliative care involvement than those with CNS progressive disorders. CONCLUSIONS: Significant differences in patterns of care at the end of life exist depending on LT-CCC type. Attention to these patterns is important to ensure equal access to palliative care and targeted improvements in end-of-life care for these populations.
DeCourcey DD; Silverman M; Oladunjoye A; Balkin Emily M; Wolfe J
The Journal Of Pediatrics
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpeds.2017.09.078" target="_blank" rel="noreferrer">10.1016/j.jpeds.2017.09.078</a>