End-of-Life Transitions and Hospice Utilization for Adolescents

Abstract

Adolescents with life-limiting illnesses have intensive end-of-life trajectories and could benefit from initiation of hospice services. The medical home model, which includes having a usual source of primary care, may help facilitate quality outcomes at the end-of-life for adolescents. The purpose of this study was to determine the relationship between having a usual source of primary care on hospice utilization and end-of-life transitions among adolescents between 15–20 years with a life-limiting illness. A retrospective cohort design used 2007–2010 California Medicaid claims data (n=585). Our dependent variables were hospice utilization (i.e., hospice enrollment, hospice length of stay) and the independent variable was usual source of primary care. Multivariate regression techniques including least squares regression, multivariate logistic regression, and negative binomial regression were used in the analysis of the relationship between usual source of primary care and hospice utilization and end-of-life transitions. Ten percent of our sample utilized hospice services. Having a usual source of primary care was associated with an increase in hospice enrollment, hospice length of stay, and end-of-life transitions. Adolescents with a cancer diagnosis were more likely to enroll in hospice services. For adolescents at the end of life, having a usual source of primary care had a significant impact on hospice enrollment and length of stay. This study is among the first to demonstrate a relationship between primary care and hospice use among this vulnerable population.

Children Enrolled in Hospice Care Under Commercial Insurance: A Comparison of Different Age Groups

“…Children in this study averaged less than 5 days in hospice. This result was consistent with prior studies that examined hospice utilization among Medicaid beneficiaries, 9,16 including adolescents, 31 and those with intellectual disability. 32 Additionally, the finding that a majority of study participants visited their primary care physician in the last year of life was similar to the results of Lindley and Nageswaren 17 who found among Medicaid beneficiaries that over 60% of children had at least 1 visit to their primary care provider.…”

An economic examination of private insurance claims among adolescents and young adults who were enrolled in hospice during the last year of life

“…The average hospice LOS was low, with adolescents having longer LOS in hospice than young adults. This finding was consistent with other reports of children and adolescents 2,14. From a developmental perspective, AYAs at the EOL are at particular risk of anticipatory grief and unmet psychosocial needs,15,16 and hospice represents a model of comprehensive care that allows for both psychological care and enhanced symptom management 17.…”

“…This finding was consistent with other reports of children and adolescents. 2 , 14 From a developmental perspective, AYAs at the EOL are at particular risk of anticipatory grief and unmet psychosocial needs, 15 , 16 and hospice represents a model of comprehensive care that allows for both psychological care and enhanced symptom management. 17 While AYA have been a recognized population at risk of health disparities in cancer, 18 – 20 there is a need to explore the disparities in health care among this age group beyond just those with cancer.…”

Differences in characteristics of children with cancer who receive standard versus concurrent hospice care

“…In contrast, parents who choose to enroll in hospice receive end‐of‐life care in their home settings. Hospices can provide a variety of services such as durable medical equipment, pain management, and psychosocial support to parents when the child dies 9–11 . As a result, parents who use hospice services report better quality of life, quicker adaption to normal social functioning, and less guilt than parents who chose in‐hospital settings 12 …”

“…Hospices can provide a variety of services such as durable medical equipment, pain management, and psychosocial support to parents when the child dies. [9][10][11] As a result, parents who use hospice services report better quality of life, quicker adaption to normal social functioning, and less guilt than parents who chose in-hospital settings. 12 Until recently, a barrier to hospice care utilization was that children had to forego curative treatments, therapies, and medications to enroll in hospice.…”