Patterns of Care at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions - 31/01/18
Abstract |
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 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.
Le texte complet de cet article est disponible en PDF.Keywords : palliative care, complex chronic conditions, end-of-life care, parental perspectives
Abbreviations : 5Cs, ACP, BCH, CCC, CNS, CPR, DNR, EOL, ICU, LT-CCCs
Plan
Support for this work was provided by the Agency for Healthcare Research and Quality (K12 HS022986): Mentored Career Development in Child and Family Centered Outcomes Research. The authors declare no conflicts of interest. |
Vol 193
P. 196 - février 2018 Retour au numéroBienvenue sur EM-consulte, la référence des professionnels de santé.
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