Quality of paediatric hospice care for children with and without multiple complex chronic conditions

Abstract

Background: Hospice care for children with multiple complex chronic conditions (MCCC) is complicated given their unique health at the end of life (EOL). Little is known about the quality of the hospice care MCCC children receive and how that might differ from children without MCCC. Objective: To compare the quality of hospice care (i.e., structures, processes, outcomes) between children with and without MCCC. Methods: This retrospective, comparative study used data from the National Home and Hospice Care Survey, which included a nationally representative sample of paediatric hospice patients. The Pearson chi-square and Wald tests for comparisons were used. Results: MCCC children enrolled in hospice care for over 2 months with multiple visits by hospice staff. They had low symptom burden with minimal discontinuity of care at EOL. Children without MCCC had short length of stays in hospice with few visits by nurses and other clinicians. These children had high symptom burden and significant disenrollment from hospice care to receive more aggressive treatment. Conclusions: The findings revealed significant differences in paediatric hospice care between MCCC and non-MCCC children, which provides critical insight into the quality of hospice care.