Children With Intellectual Disability and Hospice Utilization

Abstract

Over 42,000 children die each year in the United States, including those with intellectual disability (ID). Survival is often reduced when children with intellectual disability also suffer from significant motor dysfunction, progressive congenital conditions, and comorbidities. Yet, little is known about hospice care for children with intellectual disability. The purpose of this study was to explore the relationship between intellectual disability and hospice utilization. Additionally, we explored whether intellectual disability combined with motor dysfunction, progressive congenital conditions, and comorbidities influenced pediatric hospice utilization. Using a retrospective cohort design and data from the 2009 to 2010 California Medicaid claims files, we conducted a multivariate analysis of hospice utilization. This study shows that intellectual disability was negatively related to hospice enrollment and length of stay. We also found that when children had both intellectual disability and comorbidities, there was a positive association with enrolling in hospice care. A number of clinical implications can be drawn from the study findings that hospice and palliative care nurses use to improve their clinical practice of caring for children with ID and their families at end of life.

Comparative Effectiveness of Usual Source of Care Approaches to Improve End-of-Life Outcomes for Children With Intellectual Disability

“…We limited our sample to pediatric decedents who were younger than 21 years with fee-for-service Medicaid claims, died between January 1, 2007, and December 31, 2010, and had a moderate-toprofound ID diagnosis (International Classification of Diseases, Ninth Revision codes 318 and 319). 3,10,21 For the purposes of this comparative effectiveness analysis, children with only an USC or USC plus TCM were included. We excluded children who were non-California residents or participated in Medicaid managed care plans because the Medicaid files do not include claims for managed care beneficiaries.…”

“…7e9 This end-of-life scenario is compounded by the fact that children with ID rarely use hospice care services. 10 Thus, the high emergency room utilization and hospital readmissions combined with low hospice enrollment underscore the need for successful interventions that can be rapidly implemented to the existing health care delivery system.…”

“…In our preliminary work, we have found that having an USC positively influences hospice enrollment, especially among adolescents, 17 whereas TCM affected hospice length of stay for children. 10 However, no literature could be identified that compared the effectiveness of USC only to that of USC plus TCM in a population of children with ID.…”

End of life and people with intellectual disability

“…Duc, Herbert, and Heussler's () paper describes the challenges of providing paediatric palliative care to children with intellectual disability. To our knowledge, this is one of the few available publications examining children's palliative care, and we know of just one recent empirical research study (Lindley, Colman, & Meadows, ). There is no available research describing where children with intellectual disability receive care when dying, where they die or their understanding of dying and death.…”

“…Gray and Kim's (2017) Duc, Herbert, and Heussler's (2017) paper describes the challenges of providing paediatric palliative care to children with intellectual disability. To our knowledge, this is one of the few available publications examining children's palliative care, and we know of just one recent empirical research study (Lindley, Colman, & Meadows, 2017).…”