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):1388-93. doi: 10.1089/jpm.2013.0099. Epub 2013 Oct 8.


Background: As the United States braces for full implementation of health care reform, the eyes of the nation are on Medicaid. The large number of newly eligible Medicaid beneficiaries may challenge health care resources and ultimately impact quality of care. This is a special concern among current Medicaid beneficiaries such as children with complex chronic conditions (CCCs) who have significant health care needs, especially at end of life (EOL). Yet, a comprehensive profile of these children is lacking.

Objective: To understand the demographic and health characteristics, health care utilization, and expenditures among Medicaid children with CCCs at EOL.

Methods: Our study used a retrospective cohort design with data from the 2007 and 2008 California Medicaid data files. Descriptive statistics were used to profile children in the last year of life.

Results: We found a diverse group of children who suffered with serious, multiple chronic conditions, and who accessed comprehensive, multidisciplinary care. Most children had neuromuscular conditions (54%), cardiovascular conditions (46%), and cancer (30%). A majority (56%) had multiple CCCs. Children with CCCs received comprehensive care including hospital inpatient (67%), primary (82%), ancillary (87%), and other acute care services (83%); however, few children utilized hospice and home health care services (26%). Significant age differences existed among the children.

Conclusions: The current California Medicaid system appears to provide comprehensive care for children at EOL. The underutilization of hospice and home health services, however, represents an opportunity to improve the quality of EOL care while potentially reducing or remaining budget neutral.

MeSH terms

  • Adolescent
  • California / epidemiology
  • Child
  • Child Health Services / economics*
  • Child Health Services / statistics & numerical data*
  • Child, Preschool
  • Chronic Disease / epidemiology*
  • Demography
  • Female
  • Health Care Reform*
  • Health Expenditures / statistics & numerical data*
  • Humans
  • Infant
  • Infant, Newborn
  • Male
  • Medicaid*
  • Retrospective Studies
  • Terminal Care*
  • United States / epidemiology
  • Young Adult