Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2018 Feb:193:196-203.e2.
doi: 10.1016/j.jpeds.2017.09.078. Epub 2017 Nov 22.

Patterns of Care at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions

Danielle D DeCourcey  1 , Melanie Silverman  1 , Adeolu Oladunjoye  1 , Emily M Balkin  2 , Joanne Wolfe  3
Affiliations

Patterns of Care at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions

Danielle D DeCourcey et al. J Pediatr. 2018 Feb.

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.

Keywords: complex chronic conditions; end-of-life care; palliative care; parental perspectives.

PubMed Disclaimer

Conflict of interest statement

The authors declare no conflicts of interest.

Figures

Figure
Figure
Online Consort Diagram for Caring for Children with Complex Chronic Conditions (5Cs) Survey Enrollment
See this image and copyright information in PMC

Comment in

References

    1. Ramnarayan P, Craig F, Petros A, Pierce C. Characteristics of deaths occurring in hospitalised children: changing trends. J Med Ethics. 2007;33(5):255–60. - PMC - PubMed
    1. Feudtner C, Christakis DA, Connell FA. Pediatric Deaths Attributable to Complex Chronic Conditions: A Population-Based Study of Washington State, 1980–1997. Pediatrics. 2000 Jul 1;106(Supplement 1):205–9. - PubMed
    1. Feudtner C, Hays RM, Haynes G, Geyer JR, Neff JM, Koepsell TD. Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services. Pediatrics. 2001;107(6):e99–e99. - PubMed
    1. Cohen E, Patel H. Responding to the rising number of children living with complex chronic conditions. Can Med Assoc J. 2014 Nov 4;186(16):1199–200. - PMC - PubMed
    1. Lindley LC, Lyon ME. A Profile of Children with Complex Chronic Conditions at End of Life among Medicaid Beneficiaries: Implications for Health Care Reform. J Palliat Med. 2013 Nov;16(11):1388. - PMC - PubMed

Publication types

MeSH terms